Cognitive Interviews Research Articles

What facets of physical function are most important to adults diagnosed with cancer?

Successful patient-focused drug development involves selecting and measuring outcomes in clinical trials that are important to patients. The U.S. Food & Drug Administration's definition of clinical benefit includes how patients feel, function, or survive. Patients are considered the experts in describing how they feel and function. In cancer trials, patient-reported measures of physical function provide insight into how patients function at baseline, benefit from the interventions being studied, and the impact of treatment side effects. We conducted a qualitative study with adults diagnosed with cancer to describe facets of physical function from their perspective and to identify which facets are most important to this patient population. Using concept elicitation and cognitive interviewing techniques, we conducted semi-structured interviews with 72 adults ≥ 22years of age with cancer who received treatment with an anticancer drug or biologic within six months of the interview. We selected participants using purposive sampling with the aim to elicit diverse experiences regarding how they may interpret and respond to questions related to physical function. Participants were presented with patient-reported outcome (PRO) items representative of PRO measures used in cancer and general populations. Five facets of how physical function relates to activities were defined from the patient perspective: ability, difficulty, limitation, satisfaction, and completion. More than half of the participants indicated that ability was the most important facet of physical function. The next most important were satisfaction (18.3%), limitation (14.1%), difficulty (5.6%), and completion (2.8%). This study demonstrates that we must be more specific about the facets of physical function that we set out to assess when we use PRO measures to describe the patient experience. These results have implications for the specificity of physical function facets when measured in cancer clinical trials.

Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer)

BackgroundOur aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM.MethodsMixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility.ResultsInitial interview participants suggested the need for three PREMs, two specific to patients: (i) a ‘prior’ questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) ‘on-trial’ that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item ‘prior’ questionnaire was completed by 162 patients and 162 patients completed the draft 35-item ‘on-trial’ questionnaire. Hierarchical and Rasch analysis produced a 14-item ‘prior’ list and a 15-item list for ‘on-trial’. Both patient PREM’s demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings.ConclusionsThe three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients’ and their carers’ experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL.

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and adolescents with advanced cancer. We adopted a four-phase research plan: (1) to elaborate the Advance QoL questionnaire for youth (8-12 and 13-18 years old) with a team of young research partners; (2) to evaluate the understandability of these versions in a sample of 12 young patients from the target population using cognitive interviews; (3) to assess social validity in the same group using a questionnaire and the content validity index (CVI); and (4) to refine the questionnaires according to these results. Four major themes were identified: (1) issues affecting the understanding of the tool; (2) issues that did not affect the understanding of the tool; (3) modifications to improve the tool; and (4) positive features of the tool. Advance QoL was well received, and feedback was positive. Adjustments were made according to young people's comments and two self-reported versions are now available. It is essential to measure the key domains of QoL in advanced cancer. Advance QoL self-report versions will help target the specific needs of young people with this condition and their families.

Translation and validation of the international consultation on incontinence questionnaire-Bowel in Danish men and women with pelvic floor disorders.

We lack a comprehensive validated Danish questionnaire to evaluate symptoms and bother regarding anal incontinence (AI). The International Consultation on Incontinence Questionnaire-Bowel (ICIQ-B) is an internationally recommended questionnaire containing 21 items, of which 17 are scored in three subscales: bowel pattern, bowel control, and quality of life. To translate the ICIQ-B into Danish and to validate the Danish version in pelvic floor disorder (PFD) patients with and without AI. The ICIQ-B was translated by a panel of healthcare professionals followed by cognitive interviews with PFD patients attending an outpatient clinic. Revisions were undertaken using an iterative process, and a backward translation was performed for the final version. Pretesting and test-retest of the ICIQ-B were done online and administrated together with the St. Mark's score. Content, structural, convergent and discriminant validity were assessed, followed by an evaluation of relative and absolute reliability, including the smallest real difference (SRD). Thirty cognitive patient interviews were performed, resulting in three revisions. The Danish ICIQ-B was found to be comprehensible and relevant but lacked items addressing the psychological impact of bowel problems. The ICIQ-B was completed online by 227 PFD patients with and without AI. The structural validity of the bowel pattern subscale could not be retrieved. Patients indicating AI had significantly higher ICIQ-B and St. Mark's scores than patients without AI, and ICIQ-B subscale scores correlated moderately with St. Mark's scores. Internal consistency was good except for the bowel pattern subscale. Seventy-six patients completed test-retest. Relative reliability was excellent for subscale scores and moderate or good for single items except for the item concerning stool consistency, which was weak. The SRD was found to be 2.8 for the bowel pattern subscale, 4.3 for bowel control subscale, and 3.6 for the quality-of-life subscale. The Danish version of the ICIQ-B can be used for Danish patients with PFD, and discriminant validity is good. The structural validity and the internal consistency of the bowel pattern subscale are questionable, indicating that some items do not represent the underlying construct. Test-retest reliability of the ICIQ-B is acceptable, but the change needed to reflect a real change above the measurement error in each subscale is three to four points.

The feeding siblings questionnaire (FSQ): Development of a self-report tool for parents with children aged 2–5 years

Over the last decade, there have been repeated calls to expand the operationalisation of food parenting practices. The conceptualisation and measurement of these practices has been based primarily on research with parent-child dyads. One unexplored dimension of food parenting pertains to the evaluation of practices specific to feeding siblings. This study describes the development and validation of the Feeding Siblings Questionnaire (FSQ) – a tool designed to measure practices in which siblings are positioned as mediators in parents’ attempts to prompt or persuade a child to eat. Item development was guided by a conceptual model derived from mixed-methods research and refined through expert reviews and cognitive interviews. These interviews were conducted in two phases, where parents responded to the questionnaire primarily to test i) the readability and relevance of each item, and ii) its overall feasibility. The instrument was completed by 330 parents (96.1% mothers) in Australia with two children aged 2–5 years, and repeated by 133 parents (40.3%) two weeks later. Exploratory factor analysis was performed on baseline data. Internal consistency and test re-test reliability of the subsequent subscales were examined. Construct validity was assessed through comparisons with existing measures of food parenting practices and child eating behaviours. The final FSQ scale included 22 items, reflecting five food parenting practices: sibling competitiveness, active sibling influence, threatening unequal division of food, sibling role modelling, and vicarious operant conditioning. Internal consistency and test re-test reliability estimates were high, and there was some evidence of convergent construct validity. While its factor structure should be confirmed in a different sample, the FSQ offers a novel tool for assessing, monitoring, and evaluating feeding interactions beyond those confined to the parent-child dyad.

Development and validation of the Cannabis Exposure in Pregnancy Tool (CEPT): a mixed methods study

BackgroundEvidence of associations between prenatal cannabis use (PCU) and maternal and infant health outcomes remains conflicting amid broad legalization of cannabis across Canada and 40 American states. A critical limitation of existing evidence lies in the non-standardized and crude measurement of prenatal cannabis use (PCU), resulting in high risk of misclassification bias. We developed a standardized tool to comprehensively measure prenatal cannabis use in pregnant populations for research purposes.MethodsWe conducted a mixed-methods, patient-oriented tool development and validation study, using a bias-minimizing process. Following an environmental scan and critical appraisal of existing prenatal substance use tools, we recruited pregnant participants via targeted social media advertising and obstetric clinics in Alberta, Canada. We conducted individual in-depth interviews and cognitive interviewing in separate sub-samples, to develop and refine our tool. We assessed convergent and discriminant validity internal consistency and 3-month test–retest reliability, and validated the tool externally against urine-THC bioassays.ResultsTwo hundred fifty four pregnant women participated. The 9-item Cannabis Exposure in Pregnancy Tool (CEPT) had excellent discriminant (Cohen’s kappa = -0.27–0.15) and convergent (Cohen’s kappa = 0.72–1.0) validity; as well as high internal consistency (Chronbach’s alpha = 0.92), and very good test–retest reliability (weighted Kappa = 0.92, 95% C.I. [0.86–0.97]). The CEPT is valid against urine THC bioassay (sensitivity = 100%, specificity = 82%).ConclusionThe CEPT is a novel, valid and reliable measure of frequency, timing, dose, and mode of PCU, in a contemporary sample of pregnant women. Using CEPT (compared to non-standardized tools) can improve measurement accuracy, and thus the quality of research examining PCU and maternal and child health outcomes.

Development of a Child-Informed Measure of Subjective Well-Being for Research on Residential Care Institutions and Their Alternatives in Low- and Middle-Income Countries

Abstract10% of children worldwide live in households without a biological parent, and 5.4 million children live in residential care institutions. This study describes a participatory, child-informed process of developing a multidimensional measure of child subjective well-being tailored towards the priorities of children who have lived in residential care. Eight focus groups were held with n = 49 adolescents reunified with family after living in residential care in Kenya and Guatemala and six focus groups were held with n = 29 young adults who had lived in residential care during childhood. After analysis of the focus groups, and using the Orphans and Vulnerable Children Wellbeing Tool as a foundation, the resulting tool contained 43 survey questions. Member checking, translation, and cognitive interviewing were conducted. The survey was administered to N = 180 young people in Kenya and Guatemala who were reunified with family after living in residential care or at risk of entering residential care. Exploratory factor analysis indicated that the measure had three salient factors with good convergent validity and internal consistency: care and safety (12 items), basic needs (13 items), and leisure and freedom (7 items). This study contributes a new, psychometrically validated survey measure that can be used to assess the well-being of children connected to residential care, as well as a replicable model for creating contextualized quantitative measures via child participation that can inform policymaking on children’s care in low- and middle-income countries.

Vision-related quality of life in children: Cross-cultural adaptation and test-retest reliability of the Danish version of the paediatric refractive error profile 2.

To translate and cross-culturally adapt PREP2 into Danish and to investigate the face validity and reliability of Danish PREP2 through cognitive interviewing, Rasch and reliability analyses. The Danish PREP2 was translated using a standardized procedure and then pretested following the Three-Steps-Interviews (TSTI) process. A total of 15 myopic children aged 7-14 wearing either orthokeratology lenses (ortho-k) or single-vision spectacles (SVS) were included in pretesting comprising cognitive interviews and Rasch analysis. Data from cognitive interviewing was analysed thematically according to Collins. Rasch analysis was used to pretest the psychometric properties in terms of person- and item-fit statistics. Reliability was assessed via test-retest using Intra-class correlation coefficient (ICC) in the CONTROL study population, which consisted of 60 Danish children aged 7-14 years wearing either ortho-k or SVS. Fifteen children participated in pilot studies comprising of cognitive interviewing and Rasch analysis and 44 out of 60 CONTROL children participated in test-retest reliability analysis. The translation process resulted in a Danish version of PREP2 corroborating the original. Pretesting highlighted issues in the contextualization of items and in marking responses. Thus, we introduced a digital format with help texts. Cognitive interviewing identified issues in the following Collins' themes: comprehension (understanding of concepts), judgement (ambiguity of items) and response (selecting answers). Rasch analysis indicated that help texts were useful for clarifying context. The ICC was 0.77 (95% CI: 0.66-0.85). The cross-cultural adaptation of PREP2 was satisfactory and issues were identified and corrected through pretesting. The test-retest reliability showed substantial consistency. The instrument could be validated in a more generalizable setting in future studies. NCT03246464 (CONTROL study).

A Mixed Methods Study Evaluating Public Understanding of “Plastic” and “Cosmetic” Surgery

Abstract Goals/Purpose The aesthetic marketplace has expanded significantly over the past decade. There has been a corresponding expansion in the types of providers offering aesthetic procedures and the organizations certifying these providers. These include the American Board of Plastic Surgery (ABPS) and the American Board of Cosmetic Surgery (ABCS). Because patients self-pay for aesthetic procedures, they exercise a high degree of autonomy when choosing a provider. Given the need to support patients in making informed decisions, this study aimed to investigate how the public understands the distinction between “plastic” and “cosmetic” surgery using a mixed methods approach. Methods/Technique The study was completed in two parts: qualitative interviews and a survey. Semi-structured qualitative interviews were conducted with post-operative aesthetic surgery patients. An interview guide asking about participants’ understanding of “plastic” versus “cosmetic” surgery was developed in collaboration with content and methodology experts, then refined through pilot testing. Purposive sampling of patients maximized representation of demographic characteristics and type of surgery. A codebook was constructed using constant comparative grounded theory, which was then applied to interview transcripts to identify emergent themes. Next, a survey instrument investigating the public’s perception of “plastic” versus “cosmetic” surgery and ABPS versus ABCS was formulated from themes identified in the interviews. Pre-testing by cognitive interviews confirmed item validity, and pilot testing confirmed internal consistency. The survey was distributed on Mechanical Turk, with respondents receiving $1.50 as compensation. Results/Complications To achieve thematic saturation, 24 patients were interviewed. Intercoder reliability was high (κ &amp;gt; 0.8). Most (18/24) participants viewed plastic and cosmetic surgery as the same (Table 1). Almost all (23/24) discussed the aesthetic component of plastic surgery while fewer (16/24) participants mentioned the aesthetic component of cosmetic surgery (Table 1). Furthermore, some participants (7/24) misunderstood the scope of cosmetic surgery, including reconstructive procedures under its umbrella (Table 1). 600 respondents completed the survey. When asked how the scopes of plastic and cosmetic surgery relate to each other, a plurality of respondents believed plastic and cosmetic surgery overlap, but each has unique features (35.4%, Figure 1). 25.9% thought plastic and cosmetic surgery were the same, and only 13.9% correctly selected that plastic surgery is inclusive of all cosmetic surgery (Figure 1). When asked who they would go see for various procedures, a plurality of respondents chose a cosmetic surgeon (44.7-49.0% depending on the procedure, Figure 2). A minority stated they would see a plastic surgeon (23.4-29.9% depending on the procedure, Figure 2) or had no preference between a plastic surgeon and a cosmetic surgeon (23.4-28.8% depending on the procedure, Figure 2). However, when asked who they thought was more qualified to perform aesthetic surgery, a plurality of respondents selected an ABPS-certified physician (ABPS 42.2%, ABCS 25.9%, both equally 26.8%, Figure 3). Conclusion These results demonstrate that despite efforts by professional plastic surgery societies, confusion remains about the difference between “plastic” and “cosmetic” surgery, with a portion of the public conflating the two. Furthermore, the survey results indicate that although the public recognizes ABPS certification as a signifier of legitimacy, they may view these physicians as “cosmetic surgeons”. These gaps in public knowledge demonstrate the need for more robust public education campaigns and legislative initiatives to increase transparency and aid patients in making informed choices about their aesthetic providers.

The PELI-D II Study: Development and Preliminary Validation of the Preferences for Leisure Activities Inventory (P-LAI) for Adult Day Services

ABSTRACT Objectives The current study aimed to develop and preliminarily validate an initial version of an instrument to assess the leisure activity preferences of people receiving adult day services (ADS). Methods Based on previously conducted concept mapping steps, we identified 12 clusters of preferences for leisure activities. We adopted the structure of the Preferences for Everyday Living Inventory and phrased our cluster labels as questions to develop a first draft of the Preferences for Leisure Activities Inventory (P-LAI). We conducted cognitive interviews (n = 8) to revise, preliminarily validate, and preliminarily finalize the P-LAI. Results The draft of the P-LAI included 25 questions. Based on the results of the cognitive interviews, the number of questions was reduced to 21, three questions were rephrased, and evidence to support the preliminary validity of the P-LAI based on the response processes was provided. Conclusions The P-LAI is the first instrument to assess preferences for leisure activities in the ADS environment. Clinical implications The preliminary results of the P-LAI allow ADS providers and healthcare professionals to assess the preferences for leisure activities of people who receive ADS in a structured way. Based on these results, preference-based services can be designed and planned, and the person-centered philosophy of care can be further operationalized in the ADS environment.

Acceptability and content validity of suicidality screening items: a qualitative study with perinatal women.

Suicide is a leading cause of death for perinatal women. It is estimated that up to 50% of women with mental health issues during pregnancy and/or after birth are not identified, despite regular contact with healthcare services. Screening items are one way in which perinatal women needing support could be identified. However, research examining the content validity and acceptability of suicide-related screening items with perinatal women is limited. This study sought to: (i) assess the acceptability and content validity of 16 suicide-related items that have been administered and/or validated in perinatal populations; and (ii) explore the potential barriers and facilitators that may affect how women respond to these items when administered during pregnancy and after birth. Twenty-one cognitive and semi-structured interviews were conducted with pregnant and postnatal women in the UK. The sample included women who had experienced self-reported mental health problems and/or suicidality during the perinatal period, and those who had not. Interviews were transcribed verbatim, and a coding framework based on the Theoretical Framework of Acceptability was applied to explore the data using deductive and inductive approaches. Findings indicated that the acceptability and content validity of suicide-related items were largely unacceptable to perinatal women in their current form. Women found terms such as 'better off dead' or 'killing myself' uncomfortable. Most women preferred the phrase 'ending your life' as this felt less confronting. Comprehensibility was also problematic. Many women did not interpret 'harming myself' to include suicidality, nor did they feel that abstract language such as 'leave this world' was direct enough in relation to suicide. Stigma, fear, and shame was central to non-disclosure. Response options and recall periods further affected the content validity of items, which created additional barriers for identifying those needing support. Existing suicide-related screening items may not be acceptable to perinatal women. Maternity practitioners and researchers should consider the phrasing, clarity, context, and framing of screening items when discussing suicidality with perinatal women to ensure potential barriers are not being reinforced. The development of specific suicidality screening measures that are acceptable, appropriate, and relevant to perinatal women are warranted.

Protocol for the Adolescent Menstrual Experiences and Health Cohort (AMEHC) Study in Khulna, Bangladesh: A Prospective cohort to quantify the influence of menstrual health on adolescent girls’ health and education outcomes.

BackgroundMenstrual health is essential for gender equity and the well-being of women and girls. Qualitative research has described the burden of poor menstrual health on health and education; however, these...

Health system implementation of the PROMIS Cognitive Function Screener in the Medicare Annual Wellness Visit: framing as abilities versus concerns

BackgroundCognitive assessment is a required component of the Medicare Annual Wellness Visit (AWV). In this prospective study, we evaluated acceptability and usefulness of a patient-reported outcome measure (the PROMIS® Cognitive Function Screener, or PRO-CS) to screen for cognitive impairment during the AWV. We compared two versions of the PRO-CS: Abilities and Concerns.MethodsWe developed PRO-CS Abilities and PRO-CS Concerns using items from the PROMIS Cognitive Function item banks. We partnered with a large health system in Pennsylvania to implement an electronic health record (EHR)-integrated version of the 4-item PRO-CS into their AWV workflow. PRO-CS Abilities was implemented in June 2022 and then replaced with PRO-CS Concerns in October 2022. We used EHR data to evaluate scores on Abilities versus Concerns and their association with patient characteristics. We gathered feedback from providers on experiences with the PRO-CS and conducted cognitive interviews with patients to evaluate their preferences for Abilities versus Concerns.ResultsBetween June 2022 and January 2023, 3,088 patients completed PRO-CS Abilities and 2,614 patients completed PRO-CS Concerns. Mean T-scores for Abilities (54.8) were slightly higher (indicating better cognition) than for Concerns (52.6). 10% of scores on Abilities and 13% of scores on Concerns indicated concern for cognitive impairment (T-score < 45). Both Abilities and Concerns were associated with clinical characteristics as hypothesized, with lower scores for patients with cognitive impairment diagnoses and those requiring assistance with instrumental activities of daily living. Abilities and Concerns had similar negative correlations with depression (r= -0.31 versus r= -0.33) and anxiety (r= -0.28 for both), while Abilities had a slightly stronger positive correlation with self-rated health (r = 0.34 versus r = 0.28). In interviews, providers commented that the PRO-CS could be useful to facilitate conversations about cognition, though several providers noted potential limitations of patient self-report. Feedback from patients indicated a preference for PRO-CS Concerns.ConclusionsOur findings suggest potential utility of the PRO-CS for cognitive screening in the Medicare AWV. PRO-CS Abilities and Concerns had similar associations with patient clinical characteristics, but the Concerns version was more acceptable to patients.

The efficacy of the Self‐Administered Interview: A systematic review

AbstractObtaining accurate information from eyewitnesses is a crucial element in criminal investigations. Interview strategies such as the Cognitive Interview (CI) and the Self‐Administered Interview (SAI) have been developed and implemented to minimise inaccuracies and enhance the recall and reliability of eyewitness evidence. The SAI is a recent development within forensic psychology. However, a question remains as to the effectiveness of the SAI as an investigative interview tool. A systematic review of published studies employing the SAI was conducted (n = 22), and all were considered in relation to three variables (estimator, system and methodological). As the number of studies within the evidence base was relatively small, we could not ascertain whether the SAI is an effective investigative interviewing tool. However, the results demonstrate a number of positive benefits of the SAI. We discuss the implications of these findings for policy and directions for future research.

Translation, Cultural Adaptation, and Content Validation of a Pleural Mesothelioma Questionnaire to Portuguese Context – A Key Tool for Epidemiological Surveillance

Objective: The main objective of this study was to describe the translation, cultural adaptation, and content validation process of the French National Surveillance Programme for Pleural Mesothelioma (FNSPPM) questionnaire for the Portuguese context. Methods: A search was conducted in the PubMed database and Web of Science, in the period from January 1, 1960, to December 31, 2022, to select the questionnaire. Forward and reverse translations, calculation of the content validity index (CVI) by a panel of experts (n = 9), and cognitive interviewing with individuals with at least one exposure to asbestos (n = 10) were performed. Experts rated items on a Likert scale (1-4) based on their relevance. The item-level content validity index (I-CVI), scale-level content validity index based on the average method (S-CVI/Ave), and scale-level content validity index based on the universal agreement method (S-CVI/UA) were calculated. Results: The final version of the FNSPPM questionnaire for the Portuguese context resulted from a translation and content validation process. The panel of experts considered the questionnaire relevant, with an I-CVI of up to 0.78 in 68 of 69 of the questions, an S-CVI/Ave of 0.98, and an S-CVI/UA of 0.90. The participants in the cognitive interviews reported an understanding of the questionnaire. Conclusion: A validated FNSPPM questionnaire for the Portuguese context is now available to study individuals with pleural mesothelioma (PM) and asbestos exposure.

A new look at parenting through the cultural context: Development and initial psychometric evidence of the Interculturally Sensitive Parenting Scale (ISPAS)

This study aimed to evaluate the measurement characteristics of a newly developed scale to assess interculturally sensitive parenting for mothers and fathers of children and adolescents ranging from 4 to 18 years of age. The development of the Interculturally Sensitive Parenting Scale (ISPAS) ended up with five separate samples, with a total of 1522 parents (884 mothers and 638 fathers), in a five-step process. In the first phase, we generated a pool with 28 items and received input from content experts (n = 5) and cognitive interviews (n = 10), resulting in 23 items. In Study 2 (n = 602), which included inter-item and item-total correlations, eigenvalues, exploratory factor analysis, scree plots, and parallel analysis, six more items were excluded from the item pool, resulting in a one-dimensional construct with 17 items. In Study 3 (n = 607), along with parenting role (mother and father) invariance, confirmatory factor analysis supported the single-factor construct with 17 items, with excellent internal consistency with a high Cronbach's alpha. In Study 4 (n = 303), the analyses indicated that the ISPAS with a one-dimensional construct had good discriminant and convergent validity. Lastly, the 4-week test-retest reliability analysis of the ISPAS in Study 5 (n = 204) supported the stability of the measure. Taken together, the findings validated the usage of the 17-item ISPAS in reliably assessing mothers' and fathers' interculturally sensitive parenting. We hope academics from different disciplines, practitioners, mental health professionals, and educators will benefit from the assessment of the ISPAS presented in this study.

Children’s understanding of well-being related questions: results of cognitive interviews in four European countries

ABSTRACT This paper presents the results of cognitive interviews with 8-year-old children from four European countries – Croatia, France, Finland, and Ireland. The aim of the interviews was to pre-test a selection of well-being-related questions as a part of questionnaire development for the first European multinational birth cohort study – Growing up in Digital Europe (GUIDE)/EuroCohort. Unlike most previous studies, we focused on a younger and more age-homogenous sample, as well as a more diverse set of well-known questionnaires. A total of 68 children participated in the study. The main suggestion for the interviewing procedure is to create a safe environment yet minimize the parents’ interference in answering. The questionnaires should use child-friendly vocabulary, tangible examples, avoid complex sentence structure and negative statements. The use of timeframes in questions should be minimal. The children can use Likert-type scales, but the number of different scales in the questionnaire should be limited.

Cross-cultural adaptation and psychometric validation of point-of-care outcome assessment tools in Chinese palliative care clinical practice

BackgroundA standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase.MethodsA study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments.ResultsCross-cultural adaptation highlighted the need to strengthen the link between the patient’s care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach’s a = 0.85, 0.75 respectively). Palliative Care Phase detected patients’ urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23–0.30), except for PCPSS-pain, which was moderate (k = 0.53).ConclusionsThe Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.

Exploring the content validity of the Chalder Fatigue Scale using cognitive interviewing in an ME/CFS population

ABSTRACT Background The Chalder Fatigue Scale, also known as the Chalder Fatigue Questionnaire (CFQ) is a Patient Reported Outcome Measure (PROM) comprising 11 items designed to measure physical and cognitive fatigue. It is widely used with people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There is no published evaluation of the content validity of the CFQ. Objectives To elicit information regarding the cognitive processes undertaken by people living with ME/CFS, when completing the CFQ to allow examination of the CFQ’s content validity. Methods A qualitative study utilising semi-structured cognitive interviewing. All data were collated according to the CFQ item but some general criticisms of the content validity of the CFQ were also identified. Results The CFQ currently consists of one item clearly related to physical symptoms (1.6), four items clearly related to cognitive function (1.8, 1.9, 1.10, 1.11) and one item relating to fatigue (1.5) which could be interpreted as cognitive and/or physical fatigue. The other five items have been identified by participants as lacking clarity (1.1, 1.7), relating to behaviour not symptoms (1.2, 1.4), or relating to sleepiness not fatigue (1.3). Conclusion Participants provided a wealth of insight into the challenges related to relevance, comprehensiveness, and comprehensibility of the CFQ, indicating that revision is required. This strengthens the case for participation of people with lived experience at all stages of PROM development. There is a need for an assessment tool/PROM for clinical and research use ME/CFS which has undergone content validation involving people living with ME/CFS.

‘I crave not to feel uncomfortable’ – investigating craving for opioids and cannabis among individuals with chronic pain

Background The assessment of drug craving is common in survey studies, including those using real-time data collection methods, such as Ecological Momentary Assessment (EMA). However, few studies investigate how participants with chronic pain interpret the word ‘craving’ and how interpretations impact survey responses. Methods We conducted a mixed-methods study among 12 individuals with chronic pain who were using prescription opioids and cannabis. Participants completed baseline surveys, cognitive interviews, and 14-day smartphone-based EMA data collection. Analyses included deductive and inductive coding of interviews and t-tests of EMA self-reports of opioid and cannabis craving. Results Four participants had negative reactions to the word ‘craving’, including mentions that these questions offended them. The remaining eight participants mentioned no negative connotation. EMA data showed that participants without negative reactions reported a greater range (opioids), higher standard deviation (opioids), and higher maximum (opioids, cannabis) on Likert-type EMA craving items, compared to those with a negative reaction. Conclusions Some individuals with chronic pain may have a negative reaction to the word ‘craving’ related to opioid and cannabis use and this reaction may impact survey responses. Alternative wording of survey items is recommended, for example focused on ‘wanting’ or ‘needing’.