Two Minimal Clinically Important Difference (2MCID) : A New Twist on an Old Concept

This work is open access licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, https://creativecommons.org/licenses/by-nc/4.0/Peer reviewe

Validation of community pharmacy : confirming the effectiveness of a pharmacist in a community setting

Validation of community pharmacy is a concept we coined to define the process carried out to demonstrate that the services provided by a community pharmacist are needed by the community. One method to undertake such a process was developed. This method involves the use of a series of Validation Tools which are measurement tools with which to monitor the standards of the service provided by a community pharmacist. Five Validation Tools were developed and subsequently the validity and reliability of these tools were tested. The developed Validation Tools were found to be valid and reliable methods which can be confidently used by community pharmacists to confirm the impact of their services on patient care.peer-reviewe

Validating tools for the monitoring of community pharmacy services

Aim: To develop and validate tools with which to monitor the standards of professional services normally provided by community pharmacists and which measure the impact of their intervention on patient care.Design: Five tools based on a quantitative measurement system were established and their validity evaluated by psychometric testing.Subjects and settings: A group of 10 community pharmacies from 184 pharmacies in Malta were selected by stratified random sampling.Outcome measures: Applicability and practicality of the tools to be used by the direct method of observation in community pharmacies, face and content validity, inter-rater reliability.Results: Raters said that they did not find difficulty documenting activities of any pharmacist using the tools. The level of agreement among the panel members examining the tools for face and content validity (review of measuring insistent to ensure that it measures what it is intended to measure) was high (Kendall coefficient of concordance 0.80) were high for all five tools.Conclusions: The five tools are user-friendly, valid and reliable, and can be used by community pharmacists to confirm the needs of their professional service and its impact on patient care.peer-reviewe

The impact of patients' chronic disease on family quality of life : an experience from 26 specialties

BACKGROUND: Previous studies have assessed family quality of life in individual disease areas and specialties. The aim of this study was to investigate the impact of disease on family members of patients over a wide range of specialties and identify key impact areas. This information is essential in order to reveal the extent of this impact and to allow strategies to be developed to support the family members of patients with chronic disease. METHODS: Semi-structured interviews were carried out with 133 family members of mostly chronically ill patients from 26 medical specialties. Family members were invited to discuss all areas of their lives that had been affected by having an unwell relative. Thematic analysis was carried out using NVivo9® software. RESULTS: Most family members were female (61%), the partner or spouse of the patient (56%), or the parent (22%). Their mean age was 56.1 years (range: 21-85 years) and the mean duration of the patient's disease was 8.9 years (range: 1 month to 60 years). Ten key themes of family quality of life were identified from interviews. The median number of themes reported by family members was six (range: 1-10). The key themes included: emotional impact (mentioned by 92% of subjects), daily activities (91%), family relationships (69%), sleep and health (67%), holidays (62%), involvement in medical care and support given to family members (61%), work and study (52%), financial impact (51%), social life (37%), and time planning (14%). Relationships between the themes were identified. CONCLUSION: This large scale multi-specialty study has demonstrated the significant, yet similar, impact that illness can have on the quality of life of patients' family members. Family quality of life is a previously neglected area of health care which needs to be addressed in order to provide appropriate support for the patient and the family unit.Peer reviewedFinal Published versio

Do Patient-Reported Outcomes Have a Role in the Management of Patients with Cystic Fibrosis?

Background: Health-related quality of life (HRQoL) is a rapidly growing area of expertise and the most commonly used patient-reported outcome (PRO). The impact of cystic fibrosis (CF) on HRQoL is liable to be great, making CF patients ideal candidates for the application of HRQoL instruments. The aims of this study were to assess the affect of CF on HRQoL, to ascertain the reliability and validity of the United Kingdom Sickness Impact Profile (UKSIP) and the Cystic Fibrosis Quality of Life Questionnaire (CFQoL) in the adult CF population, and to examine their role in the management of patients. Methods: Seventy participants were recruited from the All Wales Adult Cystic Fibrosis Centre at Llandough Hospital, UK. There were two stages to the study: self-report of the UKSIP and CFQoL; and completion of the same two questionnaires 7–10 days later. Results: The areas of HRQoL most impaired by CF were employment and concerns regarding the future. The UKSIP and CFQoL showed high internal consistency (rα = 0.89–0.93) and test–retest reliability (rs = 0.57–0.94, p < 0.005) in the CF population. Validity was variable with the UKSIP showing discrimination across socio-demographic factors, whilst the CFQoL showed increased sensitivity to clinical variables. Many parameters influenced patient-reported HRQoL, with the greatest correlations seen with the Borg score (p < 0.005). The use of a HRQoL instrument in CF annual reviews is recommended to provide holistic patient care. The results of this study underpin the value of HRQoL as a patient-reported outcome measure in the management of adult CF

Validation instruments for health promotion in the community pharmacy setting

The developments during the past fifty years have resulted in a complete shift in the role of the community pharmacist from that of mainly compounding of medicines to becoming an advisor on health-related issues (Schaefer, 1998). This shift resulted in highlighting the intervention of the pharmacist as the initial contact point for the provision of primary health care. An initiative undertaken in the United Kingdom in 1995, 'Pharmacy in a New Age', identified health promotion as one of the areas that community pharmacists should focus more on (Royal Pharmaceutical Society of Great Britain, 1996). In this day and age of cost containment. evidence-based practice is required to confirm the provision of professional services, including the provision of health promotion (Rupp, 1997). This prompted the development of the Validation Method for Community Pharmacy, which is a process carried out to confirm the effectiveness of the pharmacist in the community setting (Azzopardi, 2000).peer-reviewe

Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey

Objective: This study aimed to measure the impact of COVID-19 on the quality of life (QoL) of survivors and their partners and family members. Design and setting: A prospective cross-sectional global online survey using social media. Participants: Patients with COVID-19 and partners or family members (age ≥18 years). Intervention: Online survey from June to August 2020. Main outcome measure: The EuroQol group five dimensions three level (EQ-5D-3L) to measure the QoL of survivors of COVID-19, and the Family Reported Outcome Measure (FROM-16) to assess the impact on their partner/family member’s QoL. Results: The survey was completed by 735 COVID-19 survivors (mean age=48 years; females=563) at a mean of 12.8 weeks after diagnosis and by 571 partners and 164 family members (n=735; mean age=47 years; females=246) from Europe (50.6%), North America (38.5%) and rest of the world (10.9%). The EQ-5D mean score for COVID-19 survivors was 8.65 (SD=1.9, median=9; range=6–14). 81.1% (596/735) reported pain and discomfort, 79.5% (584/735) problems with usual activities, 68.7% (505/735) anxiety and depression and 56.2% (413/735) problems with mobility. Hospitalised survivors (20.1%, n=148) and survivors with existing health conditions (30.9%, n=227) reported significantly more problems with mobility and usual activities (pPeer reviewedFinal Published versio

Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK

© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. http://creativecommons.org/licenses/by-nc/4.0/Objective: To assign clinical meanings to the Family Reported Outcome Measure (FROM-16) scores through the development of score bands using the anchor-based approach. Design and setting: A cross-sectional online study recruited participants through UK-based patient support groups, research support platforms (HealthWise Wales, Autism Research Centre-Cambridge University database, Join Dementia Research) and through social service departments in Wales. Participants: Family members/partners (aged ≥18 years) of patients with different health conditions. Intervention: Family members/partners of patients completed the FROM-16 questionnaire and a Global Question (GQ). Main outcome measure: Various FROM-16 band sets were devised as a result of mapping of mean, median and mode of the GQ scores to FROM-16 total score, and receiver operating characteristic-area under the curve cut-off values. The band set with the best agreement with GQ based on weighted kappa was selected. Results: A total of 4413 family members/partners (male=1533, 34.7%; female=2858, 64.8%; Prefer not to say=16, 0.4%; other=6, 0.14%) of people with a health condition (male=1994, 45.2%; female=2400, 54.4%; Prefer not to say=12, 0.3%; other=7, 0.16%) completed the online survey: mean FROM-16 score=15.02 (range 0–32, SD=8.08), mean GQ score=2.32 (range 0–4, SD=1.08). The proposed FROM-16 score bandings are: 0–1=no effect on the quality of life of family member; 2–8=small effect on family member; 9–16=moderate effect on family member; 17–25=very large effect on family member; 26–32=extremely large effect on family member (weighted kappa=0.60). Conclusion: The FROM-16 score descriptor bands provide new information to clinicians about interpreting scores and score changes, allowing better-informed treatment decisions for patients and their families. The score banding of FROM-16, along with a short administration time, demonstrates its potential to support holistic clinical practice.Peer reviewe

Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe