Individual Patient Interviews Research Articles

Prevalence of potential drug-drug interactions in breast cancer patients and determination of their risk factors.

Breast cancer patients use numerous medications, which include cytotoxic chemotherapy drugs, hormonal agents and supportive medication, so they are more vulnerable to potential adverse drug interactions. This study aimed to evaluate frequency, severity, clinical importance and risk factors responsible for the Drug-drug interactions (DDIs) in a cohort of patients suffering from breast cancer. Data was obtained from 150 patients in the oncology ward (both inpatient and outpatient) with a confirmed diagnosis of breast cancer and currently receiving standard breast cancer-directed treatment. The data was recorded into a pre-designed form specifically made for this study through individual patient interviews and by reviewing the detailed medical chart records of the patients. DDIs were identified by using drug interaction software such as Medscape mobile application and Micromedex version 2.The results of this study showed that all patients were female. The mean numbers of drugs that patients used were 7. Potential drug interactions were identified in 92% of the patients. When drug groups were overviewed, 32% of interactions were between anti neoplastic drugs, 62.9% interactions were between the anti neoplastic agent and supportive care drugs and 5% of them were between anti-cancer drugs and drugs used to treat comorbidities. Major DDIs were found in 62.2% of patients, 25.3% of DDIs were moderate and 12.4% were minor. The number of drugs, comorbid diseases, and selection of chemo protocols were the risk factors for drug interactions. Most of the DDIs found in breast cancer therapy may have adverse consequences on patient health and therapeutic outcomes. Therefore, health care professionals should review the medication regimen of patients with breast cancer before starting any chemotherapy treatment.

Palliative care needs experienced by Danish patients with end-stage kidney disease.

Patients with end-stage kidney disease (ESKD) may have palliative care needs. A tool validated in a Danish context to identify such needs is lacking. The Integrated Palliative Outcome Scale-Renal (IPOS-Renal) aims to identify patients' palliative care needs. The current study is the first phase of a research project translating and validating the IPOS-Renal into Danish. To investigate palliative care needs among Danish patients with ESKD. A literature review was conducted using meta-ethnography inspired by Noblit and Hare. A focus group with health care professionals (HCPs) and semi-structured individual patient interviews were conducted and analysed using Malterud's principles of systematic text condensation. A synthesis of 15 studies, a focus group with 13 HCPs, and interviews with nine patients were conducted. We found that patients with ESKD experienced several symptoms related to physical, social, mental and existential and practical needs. The most prominent findings were fatigue, reduced physical functioning, dizziness, impaired memory, dependency on relatives or HCPs, social isolation and loss of identity. The palliative care needs identified in the Danish patient population are substantiated by the IPOS-Renal questionnaire. However, some Danish patients also appear to struggle with dizziness and impaired memory. These symptoms do not appear specifically in the IPOS-Renal questionnaire but may have to be included in a Danish version.

Care and management of a double burden of chronic diseases: Experiences of patients and perceptions of their healthcare providers.

AimThe increasing burden of comorbid HIV infection and hypertension necessitates a focus on healthcare services providing care for chronic multi-morbidities. The aim of this study was to evaluate the perceptions and experiences of 1) people living with HIV infection and comorbid hypertension, and 2) their healthcare providers, related to their diagnoses and interactions with chronic healthcare services in South Africa.MethodsThis study comprised quantitative and qualitative arms with a multi-layered approach. We randomly selected 17 public healthcare facilities providing HIV care across Cape Town and surrounding rural municipalities.ResultsInterviews were conducted with clinicians (n = 11), specialised nursing professionals (n = 10), lay counsellors (n = 12), six patients focus groups (n = 35) and 20 in-depth individual patient interviews. There were mixed views on being treated at integrated vs. separate chronic care facilities regarding quality of care and privacy/anonymity. Specialised clinics offered better care for HIV infection while hypertension and other non-communicable diseases were neglected. Privacy about HIV status maybe better maintained in integrated clinics but not if status was disclosed by having the green-coloured HIV treatment card. A single appointment date was considered advantageous as it saved time and money leading to greater compliance; however, waiting times at clinics were longer with perhaps fewer patients seen.ConclusionsThe mixed reactions elicited to the integration of healthcare services for HIV, hypertension and other non-communicable diseases highlights the complexities involved in implementing such services. Greater human resources with retraining and reskilling of healthcare staff is required for the optimal management of chronic multi-morbidities.

Understanding pretreatment loss to follow-up of tuberculosis patients: an explanatory qualitative study in Chennai, India

IntroductionPretreatment loss to follow-up (PTLFU)—dropout of patients after diagnosis but before treatment registration—is a major gap in tuberculosis (TB) care in India and globally. Patient and healthcare worker (HCW) perspectives...

Analysis of Clinical Trial Exit Interview Data in Patients with Treatment-Resistant Depression.

Clinical outcome assessments may not fully capture patients' perspectives of treatment benefit or tolerability. Incorporating individual exit interviews might enhance the description of the patient experience of drug effects. The objective of this study was to evaluate the patient treatment experience in a clinical trial of treatment-resistant depression utilizing exit interview methodology. Individual patient interviews were conducted with subjects exiting two phase II clinical trials involving investigational agents for treatment-resistant depression. Interviews included standardized questions about patients' perceptions of health changes and interest in continued use of the investigational agent. Constant comparative analysis of blinded data was used to identify, code, and categorize the data followed by a subsequent analysis of unblinded data to evaluate any potential treatment differences. Ninety subjects completed exit interviews across the two trials. Most subjects (90%, Trial 2001; 74%, Trial 2002) reported at least one health change. Most subjects rated these changes to be at least moderately important, with most being rated "very important" to "extremely important." After unblinding, participants receiving active therapy alone reported most of the positive health changes (80% of overall positive changes in Trial 2001, 89% in Trial 2002), whereas patients taking placebo alone reported the majority of negative health changes (57% in Trial 2002). Positive changes included not only anticipated changes in mood but also potential cognitive benefits such as mental alertness, improved sleep, and better concentration. Standardized interview data provided direct patient insight into the treatment experience from the patient perspective. Data from these interviews assisted in phase III endpoint selection by providing data on relevant concepts in the target treatment-resistant depression population receiving a new treatment, thus enabling the selection of tools to capture noted treatment effects and, by eliminating irrelevant constructs or measures, thereby reducing data "noise." ClinicalTrials.gov NCT01640080; NCT01627782.

Barriers and facilitators of follow-up among women with precancerous lesions of the cervix in Cameroon: a qualitative pilot study.

PurposeThis pilot study explores the barriers to adherence to follow-up among women with cervical precancer in urban Cameroon. While follow-up of women with a positive screening of cervical precancer is the most important aspect of cervical cancer secondary prevention, women with cervical precancer do not adhere frequently to recommended follow-up schedule in Cameroon. The aim of the study was to explore and describe the barriers and facilitators to follow-up for cervical precancer among women infected and uninfected with HIV in Cameroon.Participants and methodsA qualitative research design was used to answer the research questions. Participants included eight HIV-infected and -uninfected women diagnosed with cervical precancer and 19 nurses. Data were collected by in-depth individual patient interviews and focus groups with nurses. An interview guide with open-ended questions, using the social ecological model as a framework, included questions that addressed the complexities of the lives of individuals and professionals within a relational context. The interviews were audio-taped and transcribed verbatim in English language. Thematic analysis of data was completed with no epistemological or theoretical perspective underpinning the analyses.ResultsFour major themes emerged from the study. They were clinic, personal, and social barriers, and strategies to improve follow-up.ConclusionThe use of reminder phone calls and fee reduction, coupled with peer counseling and navigation of women who have been diagnosed with cervical precancer, could be effective ways of improving adherence to follow-up. Further research is needed to explore the same phenomenon among women in rural areas, especially those who were initially attended to in mobile clinics.

The experiences of patients in using sensory rooms in psychiatric inpatient care.

The use of sensory rooms and similar sensory approaches in psychiatric inpatient settings is becoming increasingly common. In sensory rooms, patients can choose different sensory stimulating items that may help regulate distress and enhance well-being. Outcomes are often measured as effects on patients' self-rated distress and rates of seclusion and restraint. The subjective experiences of patients using sensory rooms have been less explored. This paper presents a qualitative study of the experiences of 28 patients who chose to use sensory rooms on seven different types of psychiatric inpatient wards. Data were collected by individual patient interviews and by texts written by patients. A qualitative content analysis resulted in four categories: emotional calm, bodily calm, empowerment, and unexpected effects. A majority of the participants described several positive experiences, such as enhanced well-being, reduced anxiety, increased self-management, and enhanced self-esteem. Our findings align with previous research that has shown similar positive patient experiences, and support the use of sensory rooms as part of person-centred care.

A Web-Based Treatment Decision Support Tool for Patients With Advanced Knee Arthritis: Evaluation of User Interface and Content Design.

BackgroundData-driven surgical decisions will ensure proper use and timing of surgical care. We developed a Web-based patient-centered treatment decision and assessment tool to guide treatment decisions among patients with advanced knee osteoarthritis who are considering total knee replacement surgery.ObjectiveThe aim of this study was to examine user experience and acceptance of the Web-based treatment decision support tool among older adults.MethodsUser-centered formative and summative evaluations were conducted for the tool. A sample of 28 patients who were considering total knee replacement participated in the study. Participants’ responses to the user interface design, the clarity of information, as well as usefulness, satisfaction, and acceptance of the tool were collected through qualitative (ie, individual patient interviews) and quantitative (ie, standardized Computer System Usability Questionnaire) methods.ResultsParticipants were older adults with a mean age of 63 (SD 11) years. Three-quarters of them had no technical questions using the tool. User interface design recommendations included larger fonts, bigger buttons, less colors, simpler navigation without extra “next page” click, less mouse movement, and clearer illustrations with simple graphs. Color-coded bar charts and outcome-specific graphs with positive action were easiest for them to understand the outcomes data. Questionnaire data revealed high satisfaction with the tool usefulness and interface quality, and also showed ease of use of the tool, regardless of age or educational status.ConclusionsWe evaluated the usability of a patient-centered decision support tool designed for advanced knee arthritis patients to facilitate their knee osteoarthritis treatment decision making. The lessons learned can inform other decision support tools to improve interface and content design for older patients’ use.

OP141 A Patient-Reported Outcome Measure For Hemorrhoidal Disease

Introduction:Treatment options for hemorrhoidal disease (HD) include conservative treatment (e.g. laxatives), rubber band ligation, and more invasive surgical treatment options. Outcomes reported in clinical trials evaluating treatment effectiveness are heterogeneous, making comparisons difficult. Moreover, clinical outcomes, such as recurrence, complications and symptoms, do not fully represent the relevant benefits and harms of treatment to the patient. We therefore developed (i) a core outcome set (COS) for HD treatment, and (ii) a patient-reported outcome measure (PROM) evaluating symptoms and impact on daily life.Methods:Literature review established outcomes most commonly used in studies evaluating HD treatment. A Delphi study with health professionals and patients was conducted to rank and discuss the outcomes in terms of importance and completeness, and reach consensus on a COS. In addition, individual patient interviews (n=15) were held to gain insight into patient experiences with HD and treatment. A panel of experts subsequently developed a PROM that focused on the core outcomes. Face and content validity were assessed (n=10) using a retrospective verbal probing technique.Results:Recurrent symptoms, complications and treatment satisfaction were the primary focus for health professionals, while patients were more concerned with overall impact on daily life. Patients ranked blood loss, pain and itching as the most bothersome symptoms. A PROM was developed, consisting of seven items covering three domains: severity of symptoms, impact on daily life, and treatment satisfaction (if applicable). The questions and response options were clear to patients and content validity was good. The questionnaire took approximately three minutes to complete.Conclusions:We developed a COS and a PROM for HD treatment. The PROM can be used in clinical trials as the primary outcome measure evaluating treatment effectiveness from the patient's perspective. It can also support shared decision-making regarding individual treatment pathways in clinical practice. A psychometric validation study is currently underway.

Designing a Process Evaluation to Examine Mechanisms of Change in Return to Work Outcomes Following Participation in Occupational Rehabilitation: A Theory-Driven and Interactive Research Approach

There is a growing consensus that professional action in occupational rehabilitation should be research-based, and that practice-based knowledge is needed to achieve contextual insight and new theoretical understanding. Few study design examples exist to help inform an evaluation plan and develop research-practice interactions to examine process complexity of targeted occupational rehabilitation programs. This study design article is a proposal on a theory-driven and interactive research methodology for a process evaluation of a pragmatic intervention trial, known as STAiR. The aim of the process evaluation is to examine the delivery and implementation of an inpatient and an outpatient occupational rehabilitation program, and explore active mechanisms pertaining to patient experiences of the return to work (RTW) process. Qualitative and interactive data collection methods will include (a) participant observation of program setting and activities; (b) participatory dialogue conferences with program providers to facilitate initial logic modelling; (d) individual patient interviews at program intake and follow up; and (d) focus groups with rehabilitation teams and external stakeholders. The qualitative data will be supplemented with description of program activities and patient questionnaires. Program logic modelling is suggested to inform a logic analysis of how expected RTW outcomes and delivery of program activities are aligned and how contextual characteristics may clarify differences in achieved RTW outcomes. The proposed process evaluation approach may inform future design discussions and theoretical understanding, and it is expected that the applied knowledge gained through this study may help rehabilitation professionals better navigate potential challenges in clinical evaluation efforts.

Health-Related Quality of Life and Functional Ability of Patients with Rheumatoid Arthritis: A Study from a Tertiary Care Hospital in Thailand

ObjectivesTo assess the health-related quality of life and functional ability of patients with rheumatoid arthritis (RA) using the Thai EuroQol five-dimensional questionnaire (EQ-5D) and the Thai Health Assessment Questionnaire (HAQ), and to analyze correlations between the scores from both questionnaires. MethodsThis cross-sectional study was conducted among 221 patients with RA aged 18 years or older at a tertiary care hospital in Thailand. Data collection methods included individual patient interviews and data gathering from medical records. The correlations between the EQ-5D and HAQ scores were analyzed using Spearman’s rank correlation coefficients. ResultsMost patients were female (78.3%), aged 41 to 60 years (57.0%), having had RA for 12 to 60 months (43.0%), and being in an active disease state (60.6%). From the EQ-5D, most patients reported no problems in each dimension, except for mobility and pain/discomfort. For the HAQ, most patients reported no difficulty for almost all activities, except for arising. The medians (interquartile ranges) for the EQ-5D utility, EuroQol visual analogue scale (EQ VAS), and HAQ scores were 0.65 (0.55–0.73), 70 (50–80), and 0.25 (0.00–0.81), respectively. The Spearman’s rank correlation coefficients were 0.42 for the EQ-5D utility and EQ VAS scores (P = 0.01), −0.65 for the EQ-5D utility and HAQ scores (P < 0.001), and −0.39 for the EQ VAS and HAQ scores (P < 0.001). ConclusionsThe health-related quality of life and functional ability of most patients in our study were partially affected by the disease. The EQ-5D and HAQ scores significantly correlated at a moderate to strong level.

Exploring challenges in the patient’s discharge process from the internal medicine service: A qualitative study of patients’ and providers’ perceptions

ABSTRACTIn hospital-based medicine units, patients have a wide range of complex medical conditions, requiring timely and accurate communication between multiple interprofessional providers at the time of discharge. Limited work has investigated the challenges in interprofessional collaboration and communication during the patient discharge process. In this study, authors qualitatively assessed the experiences of internal medicine providers and patients about roles, challenges, and potential solutions in the discharge process, with a phenomenological focus on the process of collaboration. Authors conducted interviews with 87 providers and patients—41 providers in eight focus-groups, 39 providers in individual interviews, and seven individual patient interviews. Provider roles included physicians, nurses, therapists, pharmacists, care coordinators, and social workers. Interviews were audio-recorded and transcribed verbatim, followed by iterative review of transcripts using qualitative coding and content analysis. Participants identified several barriers related to interprofessional collaboration during the discharge process, including systems insufficiencies (e.g., medication reconciliation process, staffing challenges); lack of understanding others’ roles (e.g., unclear which provider should be completing the discharge summary); information-communication breakdowns (e.g., inaccurate information communicated to the primary medical team); patient issues (e.g., patient preferences misaligned with recommendations); and poor collaboration processes (e.g., lack of structured interprofessional rounds). These results provide context for targeting improvement in interprofessional collaboration in medicine units during patient discharges. Implementing changes in care delivery processes may increase potential for accurate and timely coordination, thereby improving the quality of care transitions.

The Interstitial Cystitis/Bladder Pain Syndrome Clinical Picture: A Perspective from Patient Life Experience

IntroductionWe hypothesize that optimal management of interstitial cystitis/bladder pain syndrome requires more personalized data than obtained with symptom questionnaires and standard urological assessment. We used a qualitative approach to develop a best evidence series of questions to explore the total clinical picture in the patient with interstitial cystitis/bladder pain syndrome. MethodsThe methodology of this project included preliminary focus groups, individual patient interviews, content development and validity analyses to develop a series of questions of value to patients with interstitial cystitis/bladder pain syndrome. A new convenience sample of patients with this syndrome completed the series of questions exploring not only pain and urination symptoms, but also other biopsychosocial parameters noted to be of relevance to these patients. ResultsContent of final series of questions addressed pain, urination symptoms, flares and the 10 most important domains impacted by interstitial cystitis/bladder pain syndrome. Further questions addressed thoughts or feelings, attitudes and suicidal ideation. A series of questions addressed how patients cope with and manage their condition. A total of 32 patients with interstitial cystitis/bladder pain syndrome completed the finalized series of questions. Bladder pain and urination symptoms were primary concerns of patients but other domains related to associated nonurological conditions (poor sleep/persistent fatigue, irritable bowel syndrome-like symptoms, low back and general muscle pain, interference/impact [eg sleep, diet, travel, activities, sexual functioning], positive and negative beliefs/attitudes, and coping mechanisms) make up the total clinical picture for each patient. ConclusionsThe biopsychosocial information provided by our patients will better inform the health care professional on how to develop personalized treatment strategies and also individualized patient directed outcomes independent of bladder pain and urination symptoms.

The role of oncology nurse navigators in enhancing patient empowerment within the diagnostic phase for adult patients with lung cancer.

The objective of this study was to explore the role of oncology nurse navigators (ONN) in enhancing patient empowerment for adult patients with lung cancer during the diagnostic phase of cancer care. A qualitative descriptive design was used. Data were gathered through individual patient interviews and a focus group with the ONNs. Eight individuals participated: four adult patients with lung cancer and four oncology nurse navigators. Themes regarding the clinical functions of the ONN role in enhancing patient empowerment were identified: patient advocate, educational support, personalized symptom management, and resource navigation. ONNs are in a key position to adapt their practice to the emotional and supportive care needs required to promote patient and family empowerment.

Development and Pretesting of a Questionnaire to Assess Patient Experiences and Satisfaction with Medications (PESaM Questionnaire).

BackgroundThe aim of this study was to develop, together with the Lung Foundation Netherlands and Dutch Kidney Patients Association, patients and clinicians, a measure to evaluate patient experiences with the orphan drugs pirfenidone (for idiopathic pulmonary fibrosis [IPF]) and eculizumab (for atypical haemolytic uraemic syndrome [aHUS]), as well as a generic measure of patient experiences and satisfaction with medications.MethodsDevelopment of the Patient Experiences and Satisfaction with Medications (PESaM) questionnaire consisted of four phases: literature review (phase I); focus groups and individual patient interviews (phase II); item generation (phase III); and face and content validity testing (phase IV). Literature review aimed to identify existing disease-specific and generic patient experience measures to provide guidance on the domains of medication use relevant to patients, the number of items and type of response categories, and to generate an initial pool of items. Subsequent focus groups and patient interviews were conducted to gain insight into the perceived effectiveness of the therapies, the burden of side effects, and how the medication impacted on a patient’s daily life. Focus groups and interviews were recorded and transcribed verbatim. Coding was carried out by highlighting passages in the text and assigning each passage a code representing the following predefined categories: (1) perceived effectiveness; (2) side effects; (3) ease of use; and (4) impact of medication. Using data from phase I and II, a panel of experts selected items relevant for inclusion in the questionnaire. Individual patient interviews with IPF and aHUS patients (n = 18), using a retrospective verbal probing technique, were conducted to assess face validity, time needed to fill out the questionnaire, and content validity.ResultsThe PESaM questionnaire that was developed consisted of two disease-specific modules that assessed patient experiences with pirfenidone for the treatment of IPF, and eculizumab for the treatment of aHUS, a generic module, applicable to any medication, and a module to assess patient expectations. Review of the literature identified multiple disease- or medication-specific questionnaires and two generic patient satisfaction questionnaires. Common domains across most questionnaires were effectiveness, side effects, ease of use and overall satisfaction. Patient interviews revealed the social impact (e.g. unable to go outside) of side effects such as photosensitivity associated with pirfenidone and the risk of infection associated with eculizumab. Each PESaM module focuses on patients’ perceived effectiveness of the medication, side effects, and ease of use, and the impact these aspects have on physical and emotional health and daily life. The generic module additionally includes items related to satisfaction with the medication. Individual interviews with patients in phase IV confirmed, in general, that questions and response options of the modules were clear and content validity was good. The mean time to complete the modules ranged from 6 min for the disease-specific (aHUS) module to 9 min for the generic module.ConclusionsWe developed the PESaM questionnaire to quantitatively assess patient experiences and satisfaction with medications. A validation study is currently underway to examine the psychometric properties of the PESaM questionnaire.Electronic supplementary materialThe online version of this article (doi:10.1007/s40271-017-0234-z) contains supplementary material, which is available to authorized users.

Bedside Interprofessional Rounding: The View From the Patient's Side of the Bed.

Background:Bedside interprofessional rounding is gaining ground as a means to improve collaboration and patient outcomes, yet little is known regarding patients’ perceptions of the practice.Methods:This descriptive study used individual patient interviews to elicit views on interprofessional rounding from 35 patients at a large, urban hospital.Results:The findings identified three major categories: 1) about the rounding process; 2) clinical information; and 3) the impact/value of bedside inter-professional rounding.Discussion:Intentionally eliciting and responding to our patients’ views of interprofessional rounding may help us design methods that are patient centered and effective.

Unmet Primary Care Needs in Diabetic Patients with Multimorbidity in a Medically Underserved Area.

Background:Diabetic patients with multimorbidity in medically underserved minority communities are less engaged in primary care and experience high emergency department (ED) utilization. This study assesses unmet primary care needs among diabetic patients in a medically underserved area (MUA).Community Context:A suburb of Memphis—Whitehaven, Tennessee (Shelby County, ZIP codes 38109 and 38116)—majority African American (96.6%) with 30.5% below the poverty level.Methods:Community case study using multiple data sources including diabetes registry, individual interviews, focus groups, and a survey of 30 ED patients with diabetes and multimorbidity.Results:Diabetes registry data indicated that 95.5% of 5723 diabetic patients had multimorbidity. Over 91.5% were uncontrolled at some point in 2014 to 2015. Only 83% of patients with diabetes and multimorbidity reported having a primary care provider (PCP) and those without a PCP were more likely to report delays in needed care. Patients expressed strong interest in health coaching (88%) and receiving text messages from the doctor’s office (73%). Individual patient interviews (n = 9) and focus groups (n = 11) revealed common primary care and self-care experiences and needs including diabetes education, improved patient–provider communication, health-care access and coverage, and strengthened primary care and community.Conclusion:This study demonstrates that almost 1 in 5 ED complex diabetic patients in an MUA do not have a PCP, and that difficulty accessing primary care often results in patients forgoing needed care. Qualitative findings support these conclusions. These results suggest that primary care capacity and infrastructure to support diabetes self-care need strengthening in MUAs.

Exploring the safety and clinical use of herbal medicine in the contemporary Ghanaian context: A descriptive qualitative study

Many individuals remain skeptical about the safety and use of herbal medicine thereby slowing the efforts being made to integrate herbal medicine into Ghana’s healthcare system. This study sought to provide an in-depth description of the clinical use of herbal medicine in Ghana through interviews with participants at two locations—a national research centre and a private clinic. The study adopted a descriptive qualitative design involving individual patient and key informant interviews. Data were collected from 13 key informants. Interviews were audio-taped and transcribed verbatim. Data analysis was conducted applying the procedures of content analysis. Two major themes were generated, focusing on the production and processing of herbal medicine and its use. The sub-themes generated were production of herbs and herbal medicine; analysis of herbal products; training of herbalists, ‘client assessment’, herbal medicine treatment decisions and adjuvant therapy. It was realized that there were difficulties acquiring sustainable raw materials for herbal medicine production. Quality aspects include the input of research institutions and regulatory bodies to ensure that safe herbal products are used, and the formal training of herbalists. Patients at the study locations are assessed using orthodox means and may be treated with adjuvant therapies as well as herbal medicine. The themes raised provide insight into the issues and possibilities of integrating herbal medicine into a wider healthcare system.

Development and Initial Validation of a Questionnaire to Measure Health-Related Quality of Life of Adults with Common Variable Immune Deficiency: The CVID_QoL Questionnaire

Generic health status quality of life (QoL) instruments have been used in patients with common variable immune deficiency (CVID). However, by their nature, these tools may over- or underestimate the impact of diseases on an individual's QoL. The objective of this study was to develop and validate a questionnaire to measure specific-health-related QoL for adults with CVID (CVID_QoL). The 32-item content of the CVID_QoL questionnaire was developed using focus groups and individual patient interviews. Validation studies included 118 adults with CVID who completed Short Form-36, Saint George Respiratory Questionnaire, General Health Questionnaire-12, and EuroQol-5D questionnaire in a single session. Principal component and factor analysis solutions identified 3 scores to be similar in number and content for each solution. Validation of 3 factor scores was performed by construct validity. Reproducibility, reliability, convergent validity, and discriminant validity were evaluated. Matrices consisting of correlations between the 32 items in the CVID_QOL were calculated. Factor analysis identified 3 dimensions: emotional functioning (EF), relational functioning (RF), and gastrointestinal and skin symptoms (GSS). The instrument had good internal consistency (Cronbach's alpha, min. 0.74 for GSS, max. 0.84 for RF, n= 118) and high reproducibility (intraclass correlation coefficient, min. 0.79 for RF, max 0.90 for EF, n=27). EF and RF scores showed good convergent validity correlating with conceptually similar dimensions of other study scales. Acute and relapsing infections had a significant impact on EF and RF. This study provides evidence of the reliability and construct validity of the CVID_QoL to identify QoL issues in patients with CVID that may not be addressed by generic instruments.

Epidemiological investigation of an outbreak of cutaneous sporotrichosis, Northern Territory, Australia.

BackgroundAn outbreak of cutaneous sporotrichosis occurred in the Darwin region of the Northern Territory (NT) in 2014. We aimed to determine the source and risk factors associated with the outbreak and describe the clinical spectrum of cases seen.MethodsEpidemiological investigation of cases of cutaneous sporotrichosis identified through the Royal Darwin Hospital was undertaken to investigate risk factors and potential sources of infection. Data were collected through chart review and individual patient interviews. Environmental investigation followed identification of a common risk factor.ResultsNine confirmed cases of cutaneous sporotrichosis caused by Sporothrix schenckii were identified with onset of symptoms between April and July 2014. Patients were aged 29 to 70 years and seven were male (78 %). Two strains of S. schenckii were identified, neither of which have been previously documented. One common risk factor was identified: all patients were occupational or recreational gardeners, with each reporting exposure to mulching hay, originating from a single NT farm. Local environmental health officers visited the farm and the owners confirmed that the implicated hay had been stored over the monsoon season and had been affected by rain. Storage of hay over the wet season was a new practice.ConclusionsThis constitutes the third reported outbreak of S. schenckii sporotrichosis attributable to contaminated hay in Australia and the first outbreak of sporotrichosis in the NT. This outbreak prompted public health interventions, including distribution of information to general practitioners, farmers and suppliers in the Top End. Media reporting led to the identification and treatment of an additional case. Local practitioners should remain alert to the possibility of further occurrences of sporotrichosis.