Patient Activation for Self-Management in Patients with Idiopathic Pulmonary Fibrosis or Sarcoidosis.

BACKGROUND: Self-management is considered important in the management of patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis. However, data about the degree of activation for self-management is lacking. OBJECTIVES: The aim of the study was to determine the degree of activation for self-management in patients with IPF or sarcoidosis using the Patient Activation Measure (PAM) and to evaluate the association between PAM scores, clinical characteristics, and health-related outcomes. STUDY DESIGN AND METHODS: This cross-sectional prospective study assessed besides the PAM also demographics, lung function, dyspnea (modified Medical Research Council [mMRC]), fatigue (Checklist Individual Strength-Fatigue [CIS-Fatigue]), anxiety/depression (Hospital Anxiety and Depression Scale [HADS-A/HADS-D]), and generic health status (EuroQol five-dimensional-five-level [EQ-5D-5L]). RESULTS: Mean PAM was 55.0 (9.1) points in patients with IPF (n = 59) and low levels of patient activation for self-management (PAM ≤55.1 points) were present in 56% of the patients. PAM Scores correlated significantly (p < 0.05) with mMRC (ρ = -0.476), HADS-A (ρ = -0.326), HADS-D (ρ = -0.459), and EQ-5D-5L (ρ = 0.393). In patients with sarcoidosis (n = 59), the mean PAM score was 55.7 (11.0) points, and 46% of the patients reported low PAM levels. Significant correlations were found with mMRC (ρ = -0.356), HADS-A (ρ = -0.394), HADS-D (ρ = -0.478), and EQ-5D-5L (ρ = 0.313). CONCLUSION: About half of the outpatients with IPF or sarcoidosis have a low degree of activation for self-management, and these patients generally report more dyspnea, anxiety, depression, and a lower health status. Whether patients with a low degree of activation can be successful in self-managing their disease remains to be determined.

Respiratory and non-respiratory symptoms in patients with IPF or sarcoidosis and controls.

INTRODUCTION: Besides dyspnoea and cough, patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis may experience distressing non-respiratory symptoms, such as fatigue or muscle weakness. However, whether and to what extent symptom burden differs between patients with IPF or sarcoidosis and individuals without respiratory disease remains currently unknown. OBJECTIVES: To study the respiratory and non-respiratory burden of multiple symptoms in patients with IPF or sarcoidosis and to compare the symptom burden with individuals without impaired spirometric values, FVC and FEV1 (controls). METHODS: Demographics and symptoms were assessed in 59 patients with IPF, 60 patients with sarcoidosis and 118 controls (age ≥18 years). Patients with either condition were matched to controls by sex and age. Severity of 14 symptoms was assessed using a Visual Analogue Scale. RESULTS: 44 patients with IPF (77.3% male; age 70.6±5.5 years) and 44 matched controls, and 45 patients with sarcoidosis (48.9% male; age 58.1±8.6 year) and 45 matched controls were analyzed. Patients with IPF scored higher on 11 symptoms compared to controls (p<0.05), with the largest differences for dyspnoea, cough, fatigue, muscle weakness and insomnia. Patients with sarcoidosis scored higher on all 14 symptoms (p<0.05), with the largest differences for dyspnoea, fatigue, cough, muscle weakness, insomnia, pain, itch, thirst, micturition (night, day). CONCLUSIONS: Generally, respiratory and non-respiratory symptom burden is significantly higher in patients with IPF or sarcoidosis compared to controls. This emphasizes the importance of awareness for respiratory and non-respiratory symptom burden in IPF or sarcoidosis and the need for additional research to study the underlying mechanisms and subsequent interventions.

Current use and barriers and facilitators for implementation of standardised measures in physical therapy in the Netherlands.

BACKGROUND: In many countries, the need for physical therapists to use standardised measures has been recognised and is recommended in clinical practice guidelines. Research has shown a lack of clinimetric knowledge and clinical application of measurement instruments in daily practice may hamper implementation of these guidelines. OBJECTIVES: The aims of our study were a) to investigate the current use of measurement instruments by Dutch physical therapists; b) to investigate the facilitators and barriers in using measurement instruments. METHODS: To get a complete and valid overview of relevant barriers and facilitators, different methods of data collection were used. We conducted a literature search, semi-structured interviews with 20 physical therapists and an online survey. RESULTS: Facilitators are the fact that most therapists indicated a positive attitude and were convinced of the advantages of the use of measurement instruments. The most important barriers to the use of measurement instruments included physical therapists' competence and problems in changing behaviour, practice organisation (no room; no time) and the unavailability and feasibility of measurement instruments. Furthermore, physical therapists indicated the need to have a core set of measurement instruments with a short user's instruction on application, scoring and interpretation. CONCLUSIONS: The main barriers are on the level of the physical therapist (lack of knowledge; not focusing on the use of outcome measures) and organisation (lack of time; availability; lack of management support).There seems to be a disparity between what physical therapists say and what they do. The majority of participating physical therapists indicated a positive attitude and were convinced of the advantages of the use of measurement instruments. However, the main problem for physical therapists is when to use which instrument for what patient (lack of knowledge). Furthermore, physical therapists indicated a need to compile a core set of measurement instruments with instructions concerning application, scoring and interpretation. Based on the identified factors, a number of strategies will be developed and evaluated in future studies.

Severe Fatigue is Highly Prevalent in Patients with IPF or Sarcoidosis.

In patients with interstitial lung disease (ILD) next to dyspnea, fatigue is expected to be the most prevalent symptom. Surprisingly, the prevalence of severe fatigue has been scarcely studied in ILD patients and limited information on its associated factors is available. This study aimed to determine the prevalence of severe fatigue in patients with idiopathic pulmonary fibrosis (IPF) or pulmonary sarcoidosis and to identify the relationship between fatigue, patient characteristics, and clinical parameters. In this cross-sectional study, fatigue (checklist individual strength-fatigue (CIS-Fat)), demographics, lung function, dyspnea (modified-Medical Research Council (mMRC)), sleepiness (Epworth Sleepiness Scale), anxiety/depression (hospital anxiety and depression scale (HADS-A/HADS-D)), catastrophizing (fatigue catastrophizing scale (FCS)), functional activity impairment (respiratory illness quality-of-life (QoL-RIQ-Activity)), and health status (EuroQol five-dimensional descriptive system (EQ-5D-5L)) were assessed in outpatients with ILD. Mean CIS-Fat scores were 34.1 (SD ± 11.2) in 59 IPF patients and 40.0 (12.3) in 58 sarcoidosis patients. Severe fatigue (SD ± ≥36 points) was present in IPF patients (47.5%) and sarcoidosis (69%). In IPF, CIS-Fat correlated strongly (ρ > 0.5; p < 0.01) with FCS, QoL-RIQ-Activity, and EQ-5D-5L-Health and moderately (0.3 < ρ < 0.5; p < 0.01) with EQ-5D-5L-Index, mMRC, and HADS-D. In sarcoidosis, CIS-Fat correlated strongly with EQ-5D-5L-Health, QoL-RIQ-Activity, EQ-5D-5L-Index, HADS-D, and mMRC and moderately with FCS and hospitalization <12 months. Severe fatigue is highly prevalent in ILD patients and is associated with dyspnea, depression, catastrophizing, functional activity impairments, and QoL.

Validation of 4-meter-gait-speed test and 5-repetitions-sit-to-stand test in patients with pulmonary fibrosis: a clinimetric validation study.

Background and objective: Patients with pulmonary fibrosis (PF) have a clear exercise intolerance. The 4-meter-gait-speed (4MGS) test and the 5-repetitions-sit-to-stand (5STS) test are easy, inexpensive and reliable measures of functional performance. Both tests have been validated in healthy adults and patients with chronic obstructive pulmonary disease. 4MGS test and 5STS test have not been studied in patients with PF. Methods: In this cross-sectional clinimetric validation study 51 PF patients conducted in random order the 4MGS test, 5STS test and the 6-min walk test (6MWT) on a single day. Additionally, body weight, height, lean body mass, health-related quality of life, disease severity, handgrip strength, dyspnoea and leg fatigue were assessed. The setting was a tertiary referral center for Interstitial Lung Diseases. Results: Patients had a diagnosis of idiopathic pulmonary fibrosis (IPF, 37%), PF other than IPF (47%), or unclassified (16%). Patients walked 453±111m in six minutes. Moreover, it took the patients 2.0±0.5s to walk 4 m, and 12.0±3.8s for the 5STS test. The 4MGS test (r = 0.77; p<0.01) and the 5STS test (r = -0.41; p<0.01) correlated significantly with the distance walked in 6MWT. Indeed, 4MGS combined with handgrip strength and Medical Research Council dyspnoea grade could explain 75% of the variance in 6MWD. Conclusions: 4-meter-gait-speed and 5-repetitions sit-to-stand are significantly and independently correlated with the 6-minute walk distance in patients with pulmonary fibrosis. Indeed, 4-meter-gait-speed test may serve as a simple initial field test to assess exercise performance in patients with pulmonary fibrosis. (Sarcoidosis Vasc Diffuse Lung Dis 2018; 35: 317-326).

Comparison of international guideline programs to evaluate and update the Dutch program for clinical guideline development in physical therapy.

BACKGROUND: Clinical guidelines are considered important instruments to improve quality in health care. Since 1998 the Royal Dutch Society for Physical Therapy (KNGF) produced evidence-based clinical guidelines, based on a standardized program. New developments in the field of guideline research raised the need to evaluate and update the KNGF guideline program. Purpose of this study is to compare different guideline development programs and review the KNGF guideline program for physical therapy in the Netherlands, in order to update the program. METHOD: Six international guideline development programs were selected, and the 23 criteria of the AGREE Instrument were used to evaluate the guideline programs. Information about the programs was retrieved from published handbooks of the organizations. Also, the Dutch program for guideline development in physical therapy was evaluated using the AGREE criteria. Further comparison the six guideline programs was carried out using the following elements of the guideline development processes: Structure and organization; Preparation and initiation; Development; Validation; Dissemination and implementation; Evaluation and update. RESULTS: Compliance with the AGREE criteria of the guideline programs was high. Four programs addressed 22 AGREE criteria, and two programs addressed 20 AGREE criteria. The previous Dutch program for guideline development in physical therapy lacked in compliance with the AGREE criteria, meeting only 13 criteria. Further comparison showed that all guideline programs perform systematic literature searches to identify the available evidence. Recommendations are formulated and graded, based on evidence and other relevant factors. It is not clear how decisions in the development process are made. In particular, the process of translating evidence into practice recommendations can be improved. CONCLUSION: As a result of international developments and consensus, the described processes for developing clinical practice guidelines have much in common. The AGREE criteria are common basis for the development of guidelines, although it is not clear how final decisions are made. Detailed comparison of the different guideline programs was used for updating the Dutch program. As a result the updated KNGF program complied with 22 AGREE criteria. International discussion is continuing and will be used for further improvement of the program.

Using Outcome Measures in Daily Practice: Development and Evaluation of an Implementation Strategy for Physiotherapists in the Netherlands.

PURPOSE: To describe the development of an educational programme for physiotherapists in the Netherlands, two toolkits of measurement instruments, and the evaluation of an implementation strategy. METHOD: The study used a controlled pre- and post-measurement design. A tailored educational programme for the use of outcome measures was developed that consisted of four training sessions and two toolkits of measurement instruments. Of 366 invited physiotherapists, 265 followed the educational programme (response rate 72.4%), and 235 randomly chosen control physiotherapists did not (28% response rate). The outcomes measured were participants' general attitude toward measurement instruments, their ability to choose measurement instruments, their use of measurement instruments, the applicability of the educational programme, and the changes in physiotherapy practice achieved as a result of the programme. RESULTS: Consistent (not occasional) use of measurement instruments increased from 26% to 41% in the intervention group; in the control group, use remained almost the same (45% vs 48%). Difficulty in choosing an appropriate measurement instrument decreased from 3.5 to 2.7 on a 5-point Likert-type scale. Finally, 91% of respondents found the educational programme useful, and 82% reported that it changed their physiotherapy practice. CONCLUSIONS: The educational programme and toolkits were useful and had a positive effect on physiotherapists' ability to choose among many possible outcome measures.

Objectif : Décrire l'élaboration d'un programme de formation pour des physiothérapeutes aux Pays-Bas, deux trousses d'instruments de mesure et l'évaluation d'une stratégie de mise en œuvre. Méthode : L'étude a utilisé un concept de mesure contrôlé de type avant-après. Un programme de formation personnalisé pour l'utilisation des mesures de résultats a été élaboré; il consistait en quatre séances de formation et deux trousses d'instruments de mesure. Des 366 physiothérapeutes invités, 265 ont suivi le programme de formation (taux de réponse de 72,4 %), en plus de 235 physiothérapeutes témoins sélectionnés de façon aléatoire qui ne l'ont pas fait (taux de réponse de 28 %). Les résultats mesurés étaient l'attitude générale des participants envers les instruments de mesure, leur capacité de choisir des instruments de mesure, leur utilisation des instruments, l'applicabilité du programme de formation et les changements entraînés dans la pratique de la physiothérapie grâce au programme. Résultats : L'utilisation constante (non occasionnelle) des instruments de mesure a augmenté de 26 % à 41 % dans le groupe d'intervention; dans le groupe témoin, l'utilisation est restée presque la même (45 % par rapport à 48 %). La difficulté de choisir un instrument de mesure approprié a diminué de 3,5 à 2,7 sur échelle Likert à 5 points. Finalement, 91 % des répondants ont trouvé le programme de formation utile et 82 % ont indiqué que ce programme a changé leur pratique de la physiothérapie. Conclusions : Le programme de formation et les trousses se sont avérés utiles et ont eu un effet positif sur la capacité des physiothérapeutes à faire un choix parmi les nombreuses possibilités de mesure de résultats.

Reliability of the Dutch Pediatric Evaluation of Disability Inventory (PEDI).

OBJECTIVE: To evaluate the reliability of the Dutch version of the Pediatric Evaluation of Disability Inventory (PEDI), an instrument for measuring functional status (capability and performance in self-care, mobility and social function) of young children using parent interviews. DESIGN: Inter-interviewer reliability was studied after scoring audiotaped interviews by a second researcher. For test-retest reliability the same parent was interviewed twice within three weeks; in inter-respondent reliability both parents of a child were interviewed independently within a few days. On item level, percentage identical scores were computed, and on scale level intraclass correlation coefficients (ICC) and Cronbach's alphas were calculated. SUBJECTS: Parents of 63 nondisabled and 53 disabled (various diagnosis) children aged between 7 and 88 months were interviewed. RESULTS: On scale level, all ICCs were above 0.90 and Cronbach's alpha was 0.89 for the self-care domain, 0.74 for the mobility domain and 0.87 for the social function domain. On item level for the Functional Skills Scale, the mean percentage identical scores varied from 89 to 99, and for the Caregiver Assistance Scale from 54 to 90. Different scores between interviewers resulted partially from ambiguous interpretation of the item and/or the explanation. CONCLUSIONS: Although small adaptations have to be made, the psychometric properties of the Dutch PEDI are found to be good.

Creating and being created: the changing panorama of paediatric rehabilitation.

Paediatric rehabilitation as a discipline is rapidly changing, especially during the last decades. In the past, paediatric rehabilitation was characterized by merely adult intervention strategies in a miniaturized form, delivered by a merely adult patients-oriented profession. Theories on childhood development, however, changed, as did the focus of interventions: from impairments to function, from the child itself to family, community and peers. The call for outcome-oriented and evidence-based medicine lastly, changed paediatric rehabilitation into a mature paediatric profession with it's own scientific framework. This is reflected among other things in the increasing number of paediatric measures and instruments specifically geared to the paediatric rehabilitation profession, for example the Gross Motor Function Measure, Paediatric Evaluation of Disability Inventory and Movement ABC. More recently, paediatric exercise physiologists are pointing to the benefits of an active lifestyle and training for patients with chronic diseases and disabilities. Several studies have evaluated the effects of such training programmes and came up with positive results. It shows that paediatric rehabilitation continues to develop as a dynamic profession, having growth, childhood development and childhood activities as it's core business.