Outcomes in patient education programmes for people with rheumatic diseases: Results from a Delphi process and a study of feasibility and responsiveness

Røe, Renate; Grønning, Kjersti; Eriksson, Liv Rognerud; Zangi, Heidi A.

doi:10.1002/msc.1456

Cited by 4 publications

(2 citation statements)

References 35 publications

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“…This observed average activation surpasses that reported in the validation study conducted by the original PAM-13 developers (mean = 61.9), who examined a sample of individuals aged 45 and older from the general US population (thereof 79% with a chronic disease). Also, in numerous other international validation studies exploring diverse patient populations with varying ages and races, including individuals with osteoarthritis [ 25 ], diabetes/hypertension [ 40 , 107 ], metabolic syndrome [ 28 ], cardiac conditions [ 22 ], mental health disorders [ 20 ] or rheumatic diseases [ 106 ], the PAM-13 overall mean scores were lower, ranging between 50.0 [ 22 ] and 60.1 [ 40 ], and thus classifying into activation level 3 (see also Table 6 ). Nonetheless, our overall PAM-13 score is well in line with values found in the German validation studies by Brenk-Franz, Hibbard [ 18 ] (mean = 68.3, SD = 14.8) and Zill, Dwinger [ 19 ] (mean = 67.1, SD not given).…”

Section: Discussionmentioning

confidence: 99%

The Patient Activation Measure-13 (PAM-13) in an oncology patient population: psychometric properties and dimensionality evaluation

Roesel,

Froehlich,

Joos

et al. 2024

Health Qual Life Outcomes

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Background Accurate assessment and enhancement of health-related skills among oncology patients are pivotal for optimizing cancer care. The Patient Activation Measure (PAM-13), a questionnaire designed to reflect an individual’s knowledge, skills, and confidence in self-healthcare management, has been validated across diverse countries and settings. Concerns have been raised regarding the cross-situational applicability, as patients with specific diseases and cultural backgrounds interpret questionnaire items differently. This study aimed to examine the structural validity and psychometric properties of the PAM-13 in an oncological patient cohort. Methods Baseline data from a longitudinal non-randomized controlled study involving cancer out-patients (n = 1,125) from Comprehensive Cancer Centres in Southern Germany were analysed. The German version of the PAM-13 was employed. With classical test and item response theory methods data quality, reliability, convergent and structural validity, as well as psychometric properties were assessed. Exploratory (EFA) and confirmatory factor analyses (CFA) were employed to investigate the postulated unidimensionality of the underlying construct. With a partial credit model (PCM) we examined item fit, targeting, local independence and differential item functioning. Results Participants were predominantly female (73.0%) with a breast cancer diagnosis (41.3%). While items were generally well-accepted, ceiling effects were observed and a high mean PAM-13 score (69.7, SD = 14.2) was noted, potentially compromising responsiveness to interventions. Reliability was adequate (Cronbach’s α = 0.81), person and item separation reliability were good to excellent (0.81 and 0.99, respectively). Explorations of the unidimensionality of the construct (EFA, CFA, PCM) yielded inconclusive results, hinting towards a two-factor solution. Item difficulty rankings deviated from the original. No differential item functioning was identified, and local independence was confirmed. Conclusions While the PAM-13 serves as a valuable instrument for comprehending and promoting health-related skills in cancer patients, the identification of ceiling effects, disordered item-difficulty rankings, and inconclusive findings regarding unidimensionality contribute to the expanding body of evidence, emphasizing the dependency of PAM-13’s validity and reliability on distinctive characteristics within the population under investigation. Future research should prioritize refining or adding PAM-13 items to better capture the specific health-related challenges within diverse populations, paving the way for more effective patient engagement strategies in oncology. Trial registration number DRKS00021779

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Section: Discussionmentioning

confidence: 99%

The Patient Activation Measure-13 (PAM-13) in an oncology patient population: psychometric properties and dimensionality evaluation

Roesel,

Froehlich,

Joos

et al. 2024

Health Qual Life Outcomes

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“…The Norwegian Arthritis Self-Efficacy Scale (ASES) was used to assess perceived arthritis specific self-efficacy measured by a pain subscale (5 items) and a symptoms subscale (6 items), each scored on a 5-point Likert scale (1–5) ranging from ‘very certain’ to ‘very uncertain’, in which the sum score of each subscale were converted to a 0–100 scale (100 = high self-efficacy) [ 46 ].It is recommended to use ASES to assess self-efficacy following patient education programs for people with rheumatic diseases, but responsiveness of the ASES is reported to be poor with standard response means of 0.13–0.19 (< 6%) [ 47 ]. Conservatively, we applied a difference of ≥ 10% as an indication of meaningful change.…”

Section: Methodsmentioning

confidence: 99%

The AktiWeb study: feasibility of a web-based exercise program delivered by a patient organisation to patients with hip and/or knee osteoarthritis

Joseph

Dagfinrud

Hagen

et al. 2022

Pilot Feasibility Stud

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Background Patient organisations may be an under-utilised resource in follow-up of patients requiring long-term exercise as part of their disease management. The purpose of this study was to explore the feasibility of a web-based exercise program delivered by a patient organisation to patients with hip and/or knee osteoarthritis (OA). Methods In this pre–post feasibility study, patients aged 40–80 years with hip and/or knee OA were recruited from Diakonhjemmet Hospital. The 12-week intervention was delivered through a patient organisation’s digital platform. Feasibility was evaluated by proportion of eligible patients enrolled, proportion of enrolled patients who provided valid accelerometer data at baseline, and proportion completing the cardiorespiratory exercise test according to protocol at baseline and completed follow-up assessments. Patient acceptability was evaluated for website usability, satisfaction with the initial exercise level and comprehensibility of the exercise program. Change in clinical outcomes were assessed for physical activity, cardiorespiratory fitness and patient-reported variables. Results In total, 49 eligible patients were identified and 35 were enrolled. Thirty (86%) of these attended baseline assessments and provided valid accelerometer data and 18 (51%) completed the maximal cardiorespiratory exercise test according to protocol. Twenty-two (63%) patients completed the follow-up questionnaire, and they rated the website usability as ‘acceptable’ [median 77.5 out of 100 (IQR 56.9, 85.6)], 19 (86%) reported that the initial exercise level was ‘just right’ and 18 (82%) that the exercise program was ‘very easy’ or ’quite easy’ to comprehend. Improvement in both moderate to vigorous physical activity (mean change 16.4 min/day; 95% CI 6.9 to 25.9) and cardiorespiratory fitness, VO2peak (mean change 1.83 ml/kg/min; 95% CI 0.29 to 3.36) were found in a subgroup of 8 patients completing these tests. Across all patient-reported outcomes 24–52% of the patients had a meaningful improvement (n = 22). Conclusion A web-based exercise program delivered by a patient organisation was found to be feasible and acceptable in patients with hip and/or knee OA. Trial registration ClinicalTrials.gov, NCT04084834 (registered 10 September 2019). The Regional Committee for Medical and Health Research Ethics south-east, 2018/2198. URL: Prosjekt #632074 - Aktiv med web-basert støtte. - Cristin (registered 7 June 2019).

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Barriers to, Facilitators of, and Interventions to Support Treat‐to‐Target Implementation in Rheumatoid Arthritis: A Systematic Review

Gossec,

Bessette,

Xavier

et al. 2024

Arthritis Care & Research

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ObjectiveTreat‐to‐target (T2T) is recommended in the management of rheumatoid arthritis (RA) but its implementation is suboptimal. We aimed to identify interventional strategies targeted at improving T2T implementation in RA by systematically reviewing published evidence on barriers to, facilitators of, and interventions to support T2T implementation.MethodsSystematic and scoping literature searches in PubMed/MEDLINE®, BIOSIS Previews®, Derwent Drug File, Embase®, EMCare®, International Pharmaceutical Abstracts, and SciSearch® were conducted to identify barriers/facilitators and interventions relating to T2T implementation in RA. The quality of included studies was assessed using Critical Appraisal Skills Programme (CASP) checklists. Data related to barriers/facilitators and interventions were extracted, grouped, and summarized descriptively, and a narrative synthesis was generated.ResultsIn total, 146 articles were analyzed, of which 123 (84%) included ≥50% of the items assessed by CASP checklists. Of the 146 studies, 76 evaluated T2T barriers and facilitators, from which 329 relevant statements were identified and regrouped into 18 target areas, including: healthcare professionals’ (HCPs’) or patients’ knowledge or perceptions; patient–HCP communication or alignment; and time or resources. Overall, 56 interventions were identified from 70 studies across the 18 target areas; 54% addressed disease activity or patient‐reported outcome assessments. Of the 56 interventions identified, 36 improved T2T implementation and/or patient outcomes in RA.ConclusionDespite long‐established T2T recommendations, there remain many barriers to its implementation. Interventions to improve T2T should be developed further and assessed, with a particular focus on tailoring them to individual countries, regions, and healthcare settings.

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Outcomes in patient education programmes for people with rheumatic diseases: Results from a Delphi process and a study of feasibility and responsiveness

Abstract: Background: Patient education (PE) is recommended as an integral part of disease management for people with chronic inflammatory arthritis (IA). There is no consensus on how PE should be evaluated and which outcome measures should be used.

Cited by 4 publications

References 35 publications

The Patient Activation Measure-13 (PAM-13) in an oncology patient population: psychometric properties and dimensionality evaluation

The Patient Activation Measure-13 (PAM-13) in an oncology patient population: psychometric properties and dimensionality evaluation

The AktiWeb study: feasibility of a web-based exercise program delivered by a patient organisation to patients with hip and/or knee osteoarthritis

Barriers to, Facilitators of, and Interventions to Support Treat‐to‐Target Implementation in Rheumatoid Arthritis: A Systematic Review

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