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 3 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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Validation of the PAM-13 instrument in the Hungarian general population 40 years old and above

et al. 2022

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Background Patient activation comprises the skills, knowledge and motivation necessary for patients’ effective contribution to their care. We adapted and validated the 13-item Patient Activation Measure (PAM-13) in the ≥ 40 years old Hungarian general population. Methods A cross-sectional web survey was conducted among 900 respondents selected from an online panel via quota sampling. After 10 days, the survey was repeated on 100 respondents. The distribution, internal consistency, test–retest reliability, factor structure, convergent, discriminant and known-groups validity of PAM-13 were assessed according to the COSMIN guidelines. Results The sample comprised 779 respondents. Mean (± SD) age was 60.4 ± 10.6 years, 54% were female and 67% had chronic illness. Mean (± SD) PAM-13 score was 60.6 ± 10.0. We found good internal consistency (Cronbach alpha: 0.77), moderate test–retest reliability (ICC: 0.62; n = 75), a single-factor structure and good content validity: PAM-13 showed moderate correlation with the eHealth Literacy Scale (r = 0.40), and no correlation with age (r = 0.02), education (r = 0.04) or income (ρ = 0.04). Higher PAM-13 scores were associated with fewer lifestyle risks (p < 0.001), more frequent health information seeking (p < 0.001), participation in patient education (p = 0.018) and various online health-related behaviours. When controlling for health literacy, sociodemographic factors and health status, the association of higher PAM-13 scores with overall fewer lifestyle risks, normal body mass index, physical activity and adequate diet remained significant. Similar properties were observed in the subgroup of participants with chronic morbidity, but not in the age group 65+. Conclusion PAM-13 demonstrated good validity in the general population. Its properties in clinical populations and the elderly as well as responsiveness to interventions warrant further research.

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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 3 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

Validation of the PAM-13 instrument in the Hungarian general population 40 years old and above

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