Identifying the minimal important difference in patient-reported outcome measures in the field of people with severe mental illness: a pre–post-analysis of the Illness Management and Recovery Programme

Abstract Purpose Complementary interventions for persons with severe mental illness (SMI) focus on both personal recovery and illness self-management. This paper aimed to identify the patient-reported outcome measures (PROMs) associated with the most relevant and meaningful change in persons with SMI who attended the Illness Management and Recovery Programme (IMR). Methods The effect of the IMR was measured with PROMs concerning recovery, illness self-management, burden of symptoms and quality of life (QoL). From the QoL measures, an anchor was chosen based on the most statistically significant correlations with the PROMs. Then, we estimated the minimal important difference (MID) for all PROMs using an anchor-based method supported by distribution-based methods. The PROM with the highest outcome for effect score divided by MID (the effect/MID index) was considered to be a measure of the most relevant and meaningful change. Results All PROMs showed significant pre–post-effects. The QoL measure ‘General Health Perception (Rand-GHP)’ was identified as the anchor. Based on the anchor method, the Mental Health Recovery Measure (MHRM) showed the highest effect/MID index, which was supported by the distribution-based methods. Because of the modifying gender covariate, we stratified the MID calculations. In most MIDs, the MHRM showed the highest effect/MID indexes. Conclusion Taking into account the low sample size and the gender covariate, we conclude that the MHRM was capable of showing the most relevant and meaningful change as a result of the IMR in persons with SMI.

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Minimal Important Difference in Patient Reported Outcome Measures in Persons with Severe Mental Illness, a Post-hoc Pre-Post Analysis

10.21203/rs.2.23224/v1 ◽

2020 ◽

Author(s):

Titus Beentjes ◽

Steven Teerenstra ◽

Hester Vermeulen ◽

Maria W.G. Nijhuis-van der Sanden ◽

Betsie G.I. van Gaal ◽

...

Keyword(s):

Mental Illness ◽

Severe Mental Illness ◽

Outcome Measures ◽

Outcome Measure ◽

Minimal Important Difference ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Illness Management And Recovery ◽

Patient Reported ◽

Complementary Intervention

Abstract Background: Complementary interventions for persons with severe mental illness (SMI) provide broad strategies for recovery and illness self-management. It is not known which outcome measure can be considered to be relevant for persons with SMI. This knowledge can motivate a professional to offer and stimulate a person to participate in that intervention. This paper aimed to identify the outcome measures that determine the most relevant and meaningful change and capture the benefits of a complementary intervention. Methods: By using anchor-based and distribution-based methods, we estimated the minimal important difference (MID) to determine which outcome measure persons improved in beyond the MID to reflect a relevant change in pre-post effect of a complementary intervention, in casu the Illness Management and Recovery programme (IMR).Results: The anchor MID was based on the results of the measure Rand General Health Perception (Rand-GHP). On all MIDs, the Mental Health Recovery Measure (MHRM) had the highest score on the effect compared to its MIDs, and also on all MIDs the MHRM had the highest percentages of participants that scored above the MID. Conclusion: The Rand-GHP is considered to be an excellent measure for investigating the MID as a result of an intervention. The results of our study can be used in shared decision-making processes to determine which intervention is suitable for a person with SMI. A person who desires a recovery outcome, as measured by the MHRM, can be recommended to do the IMR programme.

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Integrated Illness Management and Recovery: A Program for Integrating Physical and Psychiatric Illness Self-Management in Older Persons with Severe Mental Illness

American Journal of Psychiatric Rehabilitation ◽

10.1080/15487768.2012.679558 ◽

2012 ◽

Vol 15 (2) ◽

pp. 131-156 ◽

Cited By ~ 11

Author(s):

Kim T. Mueser ◽

Stephen J. Bartels ◽

Meghan Santos ◽

Sarah I. Pratt ◽

Erik G. Riera

Keyword(s):

Mental Illness ◽

Severe Mental Illness ◽

Older Persons ◽

Psychiatric Illness ◽

Self Management ◽

Illness Management ◽

Illness Management And Recovery

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Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-020-00283-w ◽

2021 ◽

Vol 5 (1) ◽

Author(s):

Maria J. Santana ◽

Darrell J. Tomkins

Keyword(s):

Rotator Cuff ◽

Healthcare Providers ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Self Management ◽

Care Organization ◽

Surgical Interventions ◽

Patient Reported ◽

Rotator Cuff Injury ◽

Dash Questionnaire

Abstract Introduction The patient is the person who experiences both the processes and the outcomes of care. Information held by the patient is vital for clinical and self-management, improving health outcomes, delivery of care, organization of health systems, and formulation of health policies. Patient-reported outcome measures (PROMs) play an important role in supporting patient’s self-management. This narrative describes a patient-led use of a PROM to self-manage after a rotator cuff injury. Methods This is a narrative of a patient who tore the supraspinatus tendon in her right shoulder in an accident. The Disabilities of the Arm, Shoulder and Hand, the DASH questionnaire, was used to monitor and self-manage recovery after the accident. The DASH questionnaire is a self-reported questionnaire that measures the difficulty in performing upper extremity activities and pain in the arm, shoulder or hand. It has been widely used in research studies, but here the patient initiated its use for self-management while waiting for and after rotator cuff surgery. The patient created separate sub-scale scores for function and for pain to answer questions from healthcare providers about her recovery. Results There was noticeable improvement over 3 months of conservative treatment, from a high level of disability of 56 to 39 (score changed 17); however, the scores were nowhere near the general population normative score of 10.1. Surgery improved the score from 39 pre-surgery to 28. Post-surgical interventions included physiotherapy, pain management and platelet-riched plasma treatment (PRP). The score was 14 4 weeks post-PRP. Conclusions The patient found the DASH useful in monitoring recovery from a rotator cuff injury (before and after surgery). The DASH contributed to communication with healthcare professionals and supported the clinical management. The DASH questionnaire was able to capture the patient’s experience with the injury and surgical recovery, corroborating an improvement in function while there was persistent post-surgical pain.

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FRI0562 THE PERSPECTIVE OF YOUNG PEOPLE WITH INFLAMMATORY ARTHRITIS ON PATIENT REPORTED OUTCOME MEASURES: RESULTS OF A EUROPE-WIDE SURVEY

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2020-eular.4618 ◽

2020 ◽

Vol 79 (Suppl 1) ◽

pp. 883-883

Author(s):

A. Alunno ◽

E. Mosor ◽

T. Stamm ◽

P. Studenic

Keyword(s):

Young People ◽

Qualitative Study ◽

Personal Experience ◽

Large Scale ◽

Young Patients ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Self Management ◽

Research Support ◽

Patient Reported

Background:Although patient-reported outcome measures (PROMs) are widely used in clinical practice and research, it is unclear if these instruments adequately cover the perspective of young people (18-35 years) with inflammatory arthritis (IA). We recently performed focus groups on PROMs with 53 young IA patients from 4 European countries, but the perspective of these patients has never been explored on a large scale.Objectives:To explore personal experience, opinions and beliefs of young people with IA across Europe concerning PROMs content, characteristics and ways of administration in order to inform EULAR points to consider (PtC) for including the perspective of young patients with IA into PROMs.Methods:Based on the results of our previous qualitative study, a task force including patients, rheumatologists and health professionals developed an online survey. The survey covered personal experience, preferences and opinions concerning PROMs. After being pilot tested and revised accordingly, the survey was distributed through the EULAR people with arthritis and rheumatism in Europe (PARE), Young PARE networks and the Emerging EULAR Network (EMEUNET).Results:547 people (88% females) from 29 countries aged 18-35 years with a diagnosis of juvenile idiopathic arthritis, rheumatoid arthritis, Still’s disease, psoriatic arthritis or spondyloarthritis completed the survey (Figure 1). Thirty-seven percent of respondents reported they never filled a PROM. A North-South and West-East Europe gradient was observed (30.4% vs 56.3% and 25.5% vs 58.8% respectively). Figure 2 outlines key findings of our survey. Among respondents having filled PROMs (n=313), two thirds perceived their access to PROM results useful for self-management of their health. Discomfort while filling PROMs was an issue for nearly half of the respondents, as questions were perceived as scaring or not relevant. This discomfort, the fear of judgement, or inadequate assessed time frames were major reasons for difficulties in translating the health experience into a rating scale. Still 75% use their own experience in the past as reference. Among several reasons, people scored differently from what they felt to emphasize how much better or worse they felt from previous assessment. Concerning preferences of numerical rating scales (NRS) or visual analogue scales (VAS) explored in all respondents regardless having ever filled in PROMs, those in favour of VAS mainly reasoned this by having more possibilities to select and those favouring NRS by better readability and interpretation. Maintaining a sitting position, preparing food, doing physical activity, intimacy and sleep problems were the items selected most frequently in the survey as in the qualitative study to be included in PROMs. The implementation of discussion on self-management, education/work and support possibilities at regular clinic visits was considered important by over 60% of responders. Overall, electronic capturing of PROMs was preferred over paper-based questionnaires (57% vs 13%).Conclusion:Our survey explored for the first time the personal experience and opinions of young people with IA concerning PROMs on a large scale and confirmed the results obtained in the qualitative study. This survey informed the EULAR PtC for including the perspective of young patients with IA into PROMs.References:[1] Mosor E et al. Arthritis Rheumatol. 2019; 71 (suppl 10)Disclosure of Interests:Alessia Alunno: None declared, Erika Mosor: None declared, Tanja Stamm Grant/research support from: AbbVie, Roche, Consultant of: AbbVie, Sanofi Genzyme, Speakers bureau: AbbVie, Roche, Sanofi, Paul Studenic Grant/research support from: Abbvie

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Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial

Journal of Medical Internet Research ◽

10.2196/19685 ◽

2020 ◽

Vol 22 (10) ◽

pp. e19685

Author(s):

Afaf Girgis ◽

Ivana Durcinoska ◽

Anthony Arnold ◽

Joseph Descallar ◽

Nasreen Kaadan ◽

...

Keyword(s):

Emergency Department ◽

Patient Reported Outcomes ◽

Well Being ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Self Management ◽

Diverse Population ◽

Web Based ◽

Patients With Cancer ◽

Patient Reported

Background Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID) RR2-10.1186/s12885-018-4729-3

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Minimal important difference and patient acceptable symptom state for PFDI-20 and POPDI-6 in POP surgery

International Urogynecology Journal ◽

10.1007/s00192-020-04513-z ◽

2020 ◽

Author(s):

Päivi K. Karjalainen ◽

Nina K. Mattsson ◽

Jyrki T. Jalkanen ◽

Kari Nieminen ◽

Anna-Maija Tolppanen

Keyword(s):

Pelvic Organ Prolapse ◽

Roc Curve ◽

Minimal Important Difference ◽

Patient Reported Outcome Measures ◽

Pelvic Organ ◽

Population Based ◽

Patient Reported Outcome ◽

Pop Surgery ◽

Patient Reported ◽

Patient Acceptable Symptom State

Abstract Introduction and hypothesis Patient-reported outcome measures are fundamental tools when assessing effectiveness of treatments. The challenge lies in the interpretation: which magnitude of change in score is meaningful for the patients? The minimal important difference (MID) is defined as the smallest difference in score that patients perceive as important. The Patient Acceptable Symptom State (PASS) represents the value of score beyond which patients consider themselves well. We aimed to determine the MID and PASS for Pelvic Floor Distress Inventory-20 (PFDI-20) and Pelvic Organ Prolapse Distress Inventory-6 (POPDI-6) in pelvic organ prolapse (POP) surgery. Methods We used data from 2704 POP surgeries from a prospective, population-based cohort. MID was determined with three anchor-based and one distribution-based method. PASS was defined using two different methods. Medians of the estimates were identified. Results The MID estimates with (1) mean change, (2) receiver-operating characteristic (ROC) curve, (3) 75th percentile, and (4) distribution-based method varied between 22.9–25.0 (median 24.2) points for PFDI-20 and 9.0–12.5 (median 11.3) for POPDI-6. The PASS cutoffs with (1) 75th percentile and (2) ROC curve method varied between 57.7–62.5 (median 60.0) for PFDI-20 and 16.7–17.7 (median 17.2) for POPDI-6. Conclusion A mean difference of 24 points in the PFDI-20 or 11 points in the POPDI-6 can be used as a clinically relevant difference between groups. Postoperative scores ≤ 60 for PFDI-20 and ≤ 17 for POPDI-6 signify acceptable symptom state.

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