The case for patient-reported pleasure

Pleasure is a cornerstone of human behavior. Its lack of consideration in the medical sciences has been to the detriment of all patients. The process of including pleasure as a medical outcome has multiple beginnings. A health-related pleasure scale must be developed for clinical purposes and original research must be conducted to establish the added value of measuring pleasure. Treatment comparisons, prediction models for recovery, side-effect investigations, and more may benefit from the collection of patient-reported pleasure. Furthermore, simply inquiring about a patient’s pleasure may serve as a positive intervention by giving them permission to discuss more than the illness in their life. This can enhance the patient-provider relationship and expand the goal of treatment from illness elimination to wellness expansion. Reporting on pleasure can also benefit patients by reallocating their attention towards the positive, rather than the often consistent orientation towards the negative as seen in most patient questionnaires. When we consider what treatments to discuss, we need to know the areas of life from which our patients draw pleasure. The experience of pleasure is what keeps us alive and in pursuit of life. The seeming discomfort and resulting avoidance of medical professionals around the topic of pleasure may be one of the most significant remaining examples of societal stigmas impacting healthcare today. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework (https://theberylinstitute.org/experience-framework/). Access other PXJ articles related to this lens. Access other resources related to this lens

Conceptualising the patient perspective of the International Classification of Functioning, Disability and Health (ICF)

Zusammenfassung Die ‚International Classification of Functioning, Disability and Health’ (ICF) ist eine Klassifikation für Alltagsfunktionen und Gesundheit in der Rehabilitation und stellt außerdem einen gemeinsamen Bezugsrahmen für alle Gesundheitsberufe dar. Kürzlich wurde die ICF vom World Health Assembly verabschiedet. Damit sind alle Mitgliedstaaten der WHO aufgefordert, die ICF zu implementieren. Wenn ein bio-psycho-soziales Denk-Modell in der Rehabilitation zur Anwendung kommt, ist es notwendig die Perspektive der Patienten zu berücksichtigen. Das übergeordnete Ziel dieser Doktorarbeit war die Konzeptualisierung der Patientenperspektive im Bezug zur ICF. Diese Arbeit besteht aus drei wissenschaftlichen Artikeln, die hintereinander präsentiert werden. Im ersten Artikel wurden klinische, tätigkeitsbezogene Instrumenten, die in der Ergotherapie im Bereich der Rheumatologie und Rehabilitation von Erwachsenen verwendet werden, zur ICF in Beziehung gesetzt. 7 Instrumente wurden in der Literatur identifiziert und analysiert. Nur ein Instrument, nämlich das Canadian Occupational Performance Measure (COPM), berücksichtigt die Perspektive der Patienten auf eine klienten-zentrierte Weise. Außerdem ergab die Analyse, dass alle 7 Instrumente nicht auf den Gesundheitszustand Bezug nehmen, sie sind also ethiologisch neutral. Im zweiten Artikel wurden konzeptionelle Modelle aus der Ergotherapie zur ICF in Beziehung gesetzt. 3 konzeptionelle Modelle wurden in der Literatur identifiziert. Die Analyse ergab, dass zwei Konzepte aus den Modellen nicht in der ICF abgebildet werden: ‘Erfahrung des Umgebungs-Raumes’ und ‚Gewohnheit’. Das Konzept ‘Ruhe’ stellt in der ICF eine ‚Körperfunktion’ dar und wird im Gegensatz dazu in den konzeptionellen Modellen als ‚aktive Entspannungstätigkeit’ definiert. Um die ICF in der klinischen Praxis umzusetzen, wurden ‚Comprehensive ICF Core Sets’ für verschiedene Gesundheitszustände entwickelt, zum Beispiel für rheumatoide Arthritis (ICF RA Core Set). Das ICF RA Core Set soll alle ICF Kategorien beinhalten, die für die Alltagsfunktion von Patienten mit rheumatoider Arthritis wichtig sind. Es wurde von Experten in einem strukturierten Konsensusprozess entwickelt. Dabei entstand eine vorläufige Version des ICF RA Core Set, die jetzt validiert und weiterentwickelt werden soll. Das Ziel des dritten Artikels war es, das ICF RA Core Set aus der Patientenperspektive zu validieren. Ein qualitativer Forschungsansatz wurde verwendet. 63 (83%) der ICF Kategorien auf der zweiten Ebene aus dem ICF RA Core Set wurden auch in den Interviews gefunden. 25 zusätzliche ICF Kategorien, die nicht Teil der vorläufigen Version des ICF RA Core Set sind, wurden in der Analyse der Interviews identifiziert. Die Validität des ICF RA Core Set aus der Patientenperspektive ist gegeben, jedoch sollten die zusätzlich genannten Kategorien für die Weiterentwicklung berücksichtigt werden

Individual interviews and focus groups in patients with rheumatoid arthritis: a comparison of two qualitative methods

Purpose: To compare two different approaches to performing focus groups and individual interviews, an open approach, and an approach based on the International Classification of Functioning, Disability and Health (ICF). Methods: Patients with rheumatoid arthritis attended focus groups (n=49) and individual interviews (n=21). Time, number of concepts, ICF categories identified, and sample size for reaching saturation of data were compared. Descriptive statistics, Chi-square tests, and independent t tests were performed. Results: With an overall time of 183h, focus groups were more time consuming than individual interviews (t=9.782; P<0.001). In the open approach, 188 categories in the focus groups and 102 categories in the interviews were identified compared to the 231 and 110 respective categories identified in the ICF-based approach. Saturation of data was reached after performing five focus groups and nine individual interviews in the open approach and five focus groups and 12 individual interviews in the ICF-based approach. Conclusion: The method chosen should depend on the objective of the study, issues related to the health condition, and the study's participants. We recommend performing focus groups if the objective of the study is to comprehensively explore the patient perspectiv

Value of self-performed joint counts in rheumatoid arthritis patients near remission

INTRODUCTION: To determine the validity and reliability of patients' self-performed joint counts compared to joint counts by professional assessors in rheumatoid arthritis (RA) patients in different disease activity states. METHODS: In patients with established RA we determined the inter-rater reliability of joint counts performed by an independent evaluator and the patient using intraclass correlation (ICC), and agreement on activity in individual joints by kappa statistics. We also performed longitudinal analyses to assess consistency of assessments over time. Finally, we investigated the concordance of joint counts of different assessors in patients with different levels of disease activity. RESULTS: The reliability of patient self-performed joint counts was high when compared to independent objective assessment (ICC; 95%confidence interval (CI)) for the assessment of swelling (0.32; 0.15 to 0.46) and tenderness (0.75; 0.66 to 0.81), with higher agreement for larger joints (kappa: 0.57 and 0.45, respectively) compared to smaller joints (metacarpo-phalangeal joint (MCPs): 0.31 and 0.45; and proximal interphalangeal joint (PIPs): 0.22 and 0.47, for swelling and tenderness, respectively). Patients in remission according to the Simplified Disease Activity Index (SDAI ≤ 3.3) showed better concordance of the joint counts (swollen joint count (SJC) ties 25/37, tender joint count (TJC) ties 26/37) compared to moderate/high disease activity states (SDAI > 11; MDA/HDA: SJC ties 9/72, TJC ties 21/72). Positive and negative predictive values regarding the presence of SDAI remission were reasonably good (0.86 and 0.95, respectively). A separate training session for patients did not improve the reliability of joint assessment. The results were consistent in the longitudinal analyses. CONCLUSIONS: Self-performed joint counts are particularly useful for monitoring in patients having attained remission, as these patients seem able to detect state of remission

Towards a nationwide implementation of a standardized nutrition and dietetics terminology in clinical practice: a pre-implementation focus group study including a pretest and using the consolidated framework for implementation research

BACKGROUND & AIMS In order to assure high quality of nutrition and dietetic care as well as research, the implementation of a standardized terminology, such as the World Health Organization (WHO) International Classification of Functioning, Disability and Health for Dietetics (ICF-Dietetics) is indispensable. The aim of this study was to explore the clinical practicability and applicability of the ICF-Dietetics in the field of nutrition and dietetic practice prior to the implementation in order to develop criteria (points to consider) for a targeted implementation strategy. METHODS A focus group study including a pretest of the ICF-Dietetics was conducted. Subsequently, facilitators and barriers for a nationwide implementation of the ICF-Dietetics in clinical nutrition and dietetic practice were identified and linked to interventions (combining theory-based and group-based approach) using the Consolidated Framework of Implementation Research (CFIR) to organize and represent data and summarized in a logic model. RESULTS In the pretest 55 clinical documentations which consisted of 248 different ICF-Dietetics categories were received. In four focus groups with 22 health professionals, 66 relevant higher-level themes and implementation strategy criteria (points to consider) were identified. These themes referred to all five domains of the CFIR, namely intervention characteristics, inner setting, outer setting, characteristics of individuals and implementation process and contained important barriers and facilitators that were linked to six implementation objectives as well as six context requirements and five main actors. CONCLUSIONS This study provides facilitators and barriers to be addressed when implementing the ICF-Dietetics in clinical practice and shows potential interventions based on this analysis. A nationwide implementation was mainly seen as a great advantage for enhancing quality and continuity of care and for providing comparable data. However, it requires further refinements and a multifaceted implementation strategy where the engagement of leadership of institutions plays a crucial role. These results have provided a foundation for a targeted implementation strategy to increase the success, reproducibility and comparability

Validation of the International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis from the patient perspective using focus groups

Functioning is recognized as an important study outcome in rheumatoid arthritis (RA). The Comprehensive ICF Core Set for RA is an application of the International Classification of Functioning, Disability and Health (ICF) of the World Health Organisation with the purpose of representing the typical spectrum of functioning of patients with RA. To strengthen the patient perspective, persons with RA were explicitly involved in the validation of the Comprehensive ICF Core Set for RA using qualitative methodology. The objective of the study was twofold: to come forward with a proposal for the most appropriate methodology to validate Comprehensive ICF Core Sets from the patient perspective; and to add evidence to the validation of the Comprehensive ICF Core Set for RA from the perspective of patients. The specific aims were to explore the aspects of functioning and health important to patients with RA using two different focus group approaches (open approach and ICF-based approach) and to examine to what extent these aspects are represented by the current version of the Comprehensive ICF Core Set for RA. The sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for the data analysis. After qualitative data analysis, the resulting concepts were linked to ICF categories according to established linking rules. Forty-nine patients participated in ten focus groups (five in each approach). Of the 76 ICF categories contained in the Comprehensive ICF Core Set for RA, 65 were reported by the patients based on the open approach and 71 based on the ICF-based approach. Sixty-six additional categories (open approach, 41; ICF-based approach, 57) that are not covered in the Comprehensive ICF Core Set for RA were raised. The existing version of the Comprehensive ICF Core Set for RA could be confirmed almost entirely by the two different focus group approaches applied. Focus groups are a highly useful qualitative method to validate the Comprehensive ICF Core Set for RA from the patient perspective. The ICF-based approach seems to be the most appropriate technique