Impact Of Physical Symptoms Research Articles

Building coping skills to relieve distress and physical symptoms: Findings from a quality improvement project of a five-week group psychoeducational program for cancer patients

Purpose/objective: To examine the effectiveness of Mind Over Matter (MOM), a group psychosocial intervention based on CBT, ACT, and mind-body interventions, from data collected during a quality improvement project. MOM was offered in person prior to COVID-19 and via telehealth after COVID-19 began. Design/research approach: Distress, as measured by anxiety, depression, the severity of physical symptoms and the impact of physical symptoms on daily functioning, was measured pre- and post-MOM. Sample: The sample included 46 participants with an experience of cancer ranging in age from 31 to 75. Findings: Overall, there were significant differences in anxiety, depression, and physical symptom severity and interference pre and post MOM. The in-person intervention showed significant differences in anxiety, depression, and physical symptom interference. There were significant differences in anxiety and physical symptom severity reported in the telehealth groups. Implications: MOM may be an effective psychosocial intervention for addressing cancer-related physical and emotional challenges making it a valuable resource for institutions trying to meet needs identified by distress screenings.

Psychology and hereditary angioedema: A systematic review.

Background: Hereditary angioedema (HAE) is caused by mutations in the C1 inhibitor (C1-INH) gene Serpin Family G Member 1(SERPING1), which results in either the decreased synthesis of normal C1-INH (C1-INH-HAE type I) or expression of unfunctional C1-INH (C1-INH-HAE type II). In recent studies, emotional stress was reported by patients as the most common trigger factor for C1-INH-HAE attacks. Moreover, patients reported considerable distress over the significant variability and uncertainty with which the disease manifests, in addition to the impact of physical symptoms on their overall quality of life. Objective: We did a systematic review of the literature to shed light on the advancements made in the study of how stress and psychological processes impact C1-INH-HAE. Methods: All of the articles on C1-INH-HAE were analyzed up to December 2019. Both medical data bases and psychological data bases were examined. The keywords (KWs) used for searching the medical and psychological data bases were the following: "hereditary angioedema," "psychology," "stress," "anxiety," and "depression." Results: Of a total of 2549 articles on C1-INH-HAE, 113 articles were retrieved from the literature search by using the related KWs. Twenty-one of these articles were retrieved, examined, and classified. Conclusion: Although the literature confirmed that stress may induce various physical diseases, it also warned against making simplistic statements about its incidence that did not take into account the complexity and multicausality of factors that contribute to C1-INH-HAE expression.

Development and preliminary validation of the Adolescent Psoriasis Quality of Life instrument: a disease-specific measure of quality of life in adolescents with psoriasis.

SummaryBackgroundNo age‐appropriate and disease‐specific instrument currently exists to measure health‐related quality of life in adolescents with psoriasis (patients aged 12–17 years).ObjectivesTo develop and provide preliminary validation of the Adolescent Psoriasis Quality of Life instrument.MethodsQualitative interviews with adolescents with psoriasis, parents of adolescents with psoriasis, and healthcare professionals informed the development of an initial item pool for the instrument, which was subsequently refined through cognitive interviews. Finally, data from an independent sample of adolescents with psoriasis (n = 50) were used for item reduction, scale construction and initial validation, using a combination of techniques from classical test theory and Rasch modelling.ResultsRich qualitative data concerning health‐related quality of life in adolescents with psoriasis (from 18 adolescents, 14 parents and four healthcare professionals), combined with cognitive interview testing (n = 12), resulted in a 41‐item draft version. Item reduction led to the final version, a 17‐item instrument consisting of two subscales showing good fit to their respective Rasch models: psychosocial impact (12 items) and the impact of physical symptoms and treatment (five items). All a priori stated hypotheses regarding construct validity were supported. Both subscales and the total scale showed acceptable test–retest reliabilities (intraclass correlations 0·97, 0·89 and 0·96) and internal consistencies (Cronbach's α 0·94, 0·81 and 0·95).ConclusionsThe preliminary form of the Adolescent Psoriasis Quality of Life instrument shows promising psychometric properties. It can be used in daily clinical practice and research to support a patient‐centred approach and inform treatment planning. What's already known about this topic? Health‐related quality of life (HRQoL) instruments should be targeted towards narrowly defined age groups, as life contexts of children, adolescents and adults may differ substantially.Dermatology‐specific instruments have been used to measure HRQoL in adolescents with psoriasis, but it is not known whether these instruments accurately capture all relevant HRQoL aspects in adolescent psoriasis.Age‐appropriate and psoriasis‐specific instruments may be more sensitive for HRQoL issues experienced by this unique group. What does this study add? The Adolescent Psoriasis Quality of Life instrument represents the first age‐appropriate and disease‐specific instrument for measuring HRQoL in adolescents (12–17 years old) with psoriasis.It is intended for use in daily clinical practice to support dermatologists and other healthcare professionals in providing optimal care for adolescents with psoriasis.

Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation.

The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients. Thirteen semi-structured interviews were conducted in patients with hereditary hemorrhagic telangiectasia. Qualitative grounded theory analyses were performed using the participants' transcripts and revealed the following six categories: Impact of physical symptoms on daily life, Quality of family and social life, Emotional and psychological outcomes related to the disease, Knowledge having a severe disease and coping strategies to manage such disease, Recognition of the disease by professional colleagues and superiors, and Knowledge and understanding from health professionals in medical care. The definition of quality of life that emerged from the participants' transcripts was essentially related to health. Individuals with hereditary hemorrhagic telangiectasia mainly focused on the physical, psychological and emotional impacts of the symptoms and their consequences on professional life and social activities. Family relationships were also highlighted in the participants' transcripts. As such, HHT patients used coping strategies to manage their disease. Finally, a particularly salient issue referred to the lack of knowledge concerning the rare nature of this disease and the ensuing inherent sense of misunderstanding.

Investigating the role of psychological flexibility, masculine self-esteem and stoicism as predictors of psychological distress and quality of life in men living with prostate cancer.

This study examined the predictive power of psychological flexibility, masculine self-esteem and stoicism in influencing psychological distress and quality of life in men diagnosed with prostate cancer. It explores relationships between these theorised predictors and prostate cancer physical symptoms, an established predictor of psychological distress and reduced quality of life. A quantitative cross-sectional survey was undertaken with 286 men previously diagnosed with prostate cancer. Correlation, hierarchical multiple regression and conditional process analysis were used to explore relationships between variables. Psychological flexibility and masculine self-esteem predicted outcomes of distress (β=-0.41, p<0.001; β=-0.27, p<0.001, respectively) and quality of life (β=-0.28, p<0.001; β=-0.28, p<0.001, respectively), beyond the impact of physical symptoms. Stoicism showed only low correlations with other predictor and outcome variables (r<0.1). Conditional process analysis showed psychological flexibility moderated the predictive effect of both prostate cancer physical symptoms and masculine self-esteem in predicting distress, but did not moderate these predictors on quality of life. Interventions targeted at raising psychological flexibility, particularly those that encourage adaptive masculine values, may be effective in reducing psychological distress in prostate cancer patients.

QOL-GNMD and patient reported functionning in genetic neuromuscular diseases: A new rasch tool

The “Quality of Life in genetic Neuromuscular Disease” questionnaire (QoL-gNMD) is a new patient reported outcome (PRO) measure tool specifically designed for patients with a slowly-progressive neuromuscular disease with genetic predominant muscular damage. The QoL-gNMDhas been developped in 3 domains: “Impact of Physical Symptoms”, “Self-perception” and “Activities and Social Participation”. The objective was to construct and develop a PRO tool, easy to use in clinical settings, and validated by Rasch model theories. Qol-gNMD was developed using focus groups consisting of expert patients meeting (5 focus group, n = 41, item bank) and then a quantitaive construction phase ( n = 150, principal component and RMT analysis). The french version of the QOL-gNMD (26 items) was administered to patients recruited in 9 tertiary hospitals dedicated to genetic neuromuscular diseases. Each QoL-gNMD domain is measured on a T score metric i.e. a normal distribution with a mean of 50 and a standard deviation of 10. High values represent good quality of life. Standard errors of measurement were estimated and adjusted using rasch model theories (RMT). For each QoL-gNMD domain we estimated, face validity, test retest reproducibility, concordant validity and the conditional minimum detectable changes. 315 patients were recruited for psychometric assessment. Each domain showed good psychometric properties (person separation index > 0.7, test-retest ICC > 0.7) and fitted the partial credit model (RMT). Concurrent validity was assessed using the WHOQOL-BREF. Estimated conditional MDC were calculated for each possible measure change. QoL-gNND is a rasch operational validated measure. QoL-gNMD English version is available but needs psychometric validation.

Understanding Experiences of Youth Growing Up with Anorectal Malformation or Hirschsprung's Disease to Inform Transition Care: A Qualitative In-Depth Interview Study.

The impact of anorectal malformation (ARM) or Hirschsprung's disease (HD) in children continues into adulthood despite early surgical correction. We aimed to explore the physical, social, and emotional impacts of these conditions on youth to inform best transition care strategies. Eligible participants were those aged between 14 and 21 years who had undergone surgery for ARM/HD in our institution. We conducted one-on-one in-depth interviews to saturation using a question guide developed from literature review and clinician expertise. Deidentified transcripts were coded by four coders (two pediatric surgeons, one psychiatrist, and one qualitative expert) for major themes using a constant comparison approach. A theoretical model for understanding the transition experience was developed using grounded theory. Out of 120 patients identified as eligible, 11 youth (6 males) participated in the study. Interviews lasted from 50 to 60 minutes. Four major themes emerged: (1) social support (subthemes: family as core, friends as outer support), (2) cognitive and emotional change (subthemes: realization/recognition of illness, matching emotional response), (3) impact of physical symptoms (subthemes: adverse effects of abnormal bowel habits, gaining bowel continence control leading to overall feeling of control, need to keep disease private), and (4) healthcare providers (viewed as important information sources). Themes did not differ by gender. Our model suggests that participants' understanding of bowel disease evolved over time with a "lightbulb" moment in preteens or early teens accompanied by increasing disease ownership and self-management. Clinicians should independently engage with patients in late childhood to address evolving emotional and information needs and encourage increasing autonomy. Future studies should explore communication approaches to meet transition needs of patients.

What a Pain: The Impact of Physical Symptoms and Health Management on Pursuit of Personal Goals Among Adolescents with Cancer.

This study examined health-related hindrance (HRH) of personal goals among adolescents receiving treatment for cancer and healthy peers. Adolescents and parents completed measures of demographics and psychosocial variables. Adolescents reported on their HRH, measured by ratings of the impact of pain, fatigue, other physical symptoms, and doing things to manage their health on self-identified personal goals. Disease-related information was abstracted from patient charts. Adolescents with cancer experienced significantly more HRH than healthy peers, and their HRH was significantly associated with poorer health-related quality of life (p < 0.001), negative affect (p = 0.03), and depressive symptoms (p = 0.03). Risk and resilience factors associated with HRH for those with cancer included pain (current and past month severity, frequency, and pain-related quality of life), fatigue, nausea, cognitive problems, worse parent-reported family functioning, and female gender. When testing these significant associates in a regression model predicting HRH among adolescents with cancer, those with more severe pain (p < 0.001) and worse parent-reported family functioning (p = 0.01) were significantly associated with HRH; fatigue was marginally (p = 0.09) significant. Results suggest that HRH is a significant problem for adolescents with cancer, particularly those who are experiencing pain. Addressing pain and other symptom management, enhancing family functioning, and helping adolescents adjust their goals or enhance support for goal pursuit may reduce HRH among adolescents with cancer. This may improve psychosocial well-being, address adolescent unmet needs, and ultimately help adolescents with cancer maintain normal developmental trajectories.

Evaluating changes in quality of life using QoL-NMD in patients with neuromuscular diseases

The “quality of life in neuromuscular disease” questionnaire (QoL-NMD) is a new health-related quality of life measurement tool specifically designed for patients with a slowly-progressive neuromuscular disease with motor deficiency. The QoL-NMD is structured into 3 domains: “impact of physical symptoms”, “self-perception” and “activities and social participation”. Our objective is to estimate conditional minimum detectable changes (cMDCs). The cMDCs help determine if a measure change reflects a change of patient's status over time or a measurement error. The QOL-NMD was administered to patients recruited in 8 tertiary hospitals dedicated to NMD. Each QoL-NMD domain was measured by a T score metric i. e. a normal distribution with a mean of 50 and a standard deviation of 10. High values represent good quality of life. Standard errors of measurement were estimated using items response theory. For each QoL-NMD domain we estimated the cMDCs associated with all measure changes. A total of 315 patients were recruited. Estimated cMDCs were generally smallest in the mid-range of all scales (between 9 and 12) and higher on the outer quartiles (up to nearly 17). The lowest mid-range cMDCs were for the domain “activities and social participation” (almost all below 10). These results provide a clinically useful means of interpreting change for individual patients on the QoL-NMD. The cDMC tables can help clinicians and investigators identify differences for individual patients that are clinically relevant to reflect a status change and motivate a modification of care.

Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study.

BackgroundNeuromyelitis optica (NMO) is an auto‐immune disease that can cause severe visual and mobility impairments. Research on health‐related quality of life (HRQoL) in NMO is scarce, limiting knowledge on factors influencing HRQoL and support needs.AimThis study provides the first qualitative exploration of HRQoL in NMO, conducted to provide a conceptual framework for the development of an NMO patient‐reported outcome measure.MethodFifteen people with NMO (aged 18–74; 11 women, 4 men) participated in semi‐structured interviews; data were analysed using constant comparative analysis.Results HRQoL in NMO is a multifaceted concept incorporating highly subjective perceptions of normality and meaning. Four major themes were identified: impact of physical symptoms on daily living, utilizing support to achieve independence, expectations for life and meaningful roles in life and purpose.DiscussionThemes highlighted the importance of perceived normality, and its relationship to attaining life goals comparable to peers, as underpinning evaluations of HRQoL. Many people with severe disability reported a high HRQoL, suggesting the inappropriateness of assuming a negative HRQoL on the basis of an individual's neurological impairment.ConclusionsThese findings further the conceptual understanding of HRQoL in NMO, informing patient‐care approaches and the development of an NMO‐specific patient‐reported outcome measure.

Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease.

To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory. We constructed a questionnaire named QoL-NMD which is composed of two general items and 24 items classified in three domains: (1) "Impact of Physical Symptoms," (2) "Self-perception" and (3) "Activities and Social Participation." Each domain has good psychometric properties (Cronbach's alpha > 0.77, test-retest ICC > 0.81, Loevinger's H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire. This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL-NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL-NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.

Psychometric properties of the Fatigue Severity Scale in polio survivors

The objective of this study was to evaluate by means of classical test theory and Rasch analysis the scaling characteristics and psychometric properties of the Fatigue Severity Scale (FSS) in polio survivors. A questionnaire,consisting of five general questions (sex, age, age at time of acute polio, sequelae of polio, and new symptoms), the FSS, and three questions from the Visual Analog Scale questions on fatigue was sent to all 196 polio survivors at the Institute for Rehabilitation in Ljubljana. Responses were assessed in terms of Cronbach's a, item-to-total correlation, factor analysis, and Rasch analysis. Of the128 (65.3%) valid questionnaires returned, those presenting no missing values were used for subsequent analyses (n = 117). The FSS showed good internal consistency: Cronbach's a was greater than 0.95,item-to-total correlation ranged from 0.68 to 0.88. A reduction from seven to three rating categories was necessary to comply with criteria for correct category function. Item difficulty estimates spanned from – 0.91to + 1.09 logits. No item bias was found for sex and age.The internal consistency of FSS was high and its item separation reliability good, indicating a satisfactory replicability of item placement in other samples. In conclusion, Rasch analysis enabled us to confirm the validity of FSS (in its 8-item version, without item 1) as a measure of the severity and impact of physical symptoms of fatigue in polio survivors, so providing a useful starting point for further studies aimed at examining additional psychometric aspects and confirming the appropriateness of the simplification of its rating categories.

Symptom Clusters Predict Event-Free Survival in Patients With Heart Failure

Physical symptoms are likely to occur in clusters that may be associated with adverse outcome in patients with heart failure (HF). Despite the importance of early recognition of worsening symptoms in HF management, the impact of physical symptoms on adverse outcome has not been explored in the context of symptom clusters. The purposes of this study were to explore which physical symptom clusters occur in HF patients and to determine the impact of symptom clusters on event-free survival. A total of 421 patients (60% male; 62 [SD, 14] years; 72% New York Heart Association class II/III) completed the modified Memorial Symptom Assessment Scale-Heart Failure to measure physical symptoms during an index hospitalization in Seoul, Korea. Times to first event of cardiac rehospitalization and cardiac death were collected for 12 months after discharge and confirmed by review of hospital records. An agglomerative hierarchical clustering approach with Ward's method was used to identify symptom clusters. Hierarchical Cox hazard regression was used to determine the impact of symptom clusters on cardiac rehospitalization and cardiac mortality. Two distinct symptom clusters, the dyspneic and the weary symptom clusters, occurred in patients with HF. Shortness of breath, difficulty breathing when lying flat, and waking up breathless at night comprised the dyspneic symptom cluster. Lack of energy, lack of appetite, and difficulty sleeping comprised the weary symptom cluster. In hierarchical Cox hazard regression, elevated distress from the weary symptom cluster independently predicted cardiac rehospitalization (hazard ratio, 1.45; 95% confidence interval, 1.09-1.93), and increased distress from the dyspneic symptom cluster independently predicted cardiac mortality (hazard ratio, 2.00; 95% confidence interval, 1.16-3.34). The weary and the dyspneic symptom clusters predicted cardiac rehospitalization and cardiac mortality, respectively. Patient education for self-monitoring of symptoms should focus on symptom clusters rather than single symptom.

Impact of physical symptoms on perceived health in the community

Objective Physical symptoms, such as musculoskeletal pain, dizziness, or headache, are common. People with more symptoms are reported to use more healthcare and have higher sickness absenteeism. We studied the impact of the number of symptoms on perceived health in a community sample. Methods Between June 2005 and March 2006, a random sample of 4741 adults was selected from the records of five general practices in The Netherlands. They were sent a questionnaire regarding the frequency and impact of physical symptoms, and other factors that may influence health (potential confounders or modifiers), including lifestyle factors, childhood illness experiences, and psychological factors. We studied the association between increasing number of physical symptoms and perceived health using the SF-36 as the outcome measure. Results Response rate was 53.5% ( n=2447). Fatigue was the most commonly reported symptom with a prevalence of 57%, followed by headache (40%) and back pain (39%). More than half of responders reported three symptoms or more. Responders with multiple symptoms were more often female, had lower educational level, less often paid work, higher body mass index, more negative childhood health experiences, and higher scores for anxiety and depression. Multiple symptoms were strongly associated with perceived health, especially among responders with negative illness perceptions, more anxiety, or those reporting family members with a chronic illness during childhood. Conclusion Physical symptoms are common and often seem to be mild. However, increasing number of symptoms is strongly associated with poorer physical, emotional, and social functioning. Different somatization processes may explain our findings.

Factors associated with the wish to hasten death: a study of patients with terminal illness.

There is considerable debate regarding the clinical issues surrounding the wish to hasten death (WTHD) in the terminally ill. The clinical factors contributing to the WTHD need further investigation among the terminally ill in order to enhance understanding of the clinical assessment and treatment needs that underlie this problem. A more detailed understanding may assist with the development of appropriate therapeutic interventions. A sample of terminally ill cancer patients (N = 256) recruited from an in-patient hospice unit, home palliative care service and a general hospital palliative care consulting service from Brisbane Australia between 1998-2001 completed a questionnaire assessing psychological (depression and anxiety), social (family relationship, social support, level of burden on others) and the impact of physical symptoms. The association between these factors and the WTHD was investigated. A high WTHD was reported by 14 % of patients. A discriminant function analysis revealed that the following variables were associated with a high WTHD (P < 0.001): higher levels of depressive symptoms, being admitted to an in-patient hospice setting, a greater perception of being a burden on others, lower family cohesion, lower levels of social support, higher levels of anxiety and greater impact of physical symptoms. Psychological and social factors are related to a WTHD among terminally ill cancer patients. Greater attention needs to be paid to the assessment of psychological and social issues in order to provide appropriate therapeutic interventions for terminally ill patients.