Quality of life in rehabilitation outpatients: normal values and a comparison with the general Dutch population and psychiatric patients.

PURPOSE: To provide Dutch normal values for rehabilitation outpatients with chronic pain or musculoskeletal diseases utilizing the World Health Organization Quality of Life questionnaire abbreviated version (WHOQOL-BREF) and analyse influence of diagnosis and patient characteristics on normal values and increase understanding in those values. METHODS: Five hundred and forty-two outpatients were referred to a rehabilitation psychologist. Referral diagnoses were "musculoskeletal", "chronic pain", "neurological" and "miscellaneous". Comparisons between groups were made for each of the four domains of the WHOQOL-BREF (scoring range 4-20). RESULTS: Domain scores of rehabilitation outpatients were physical domain 11.0 (±2.7), psychological domain 13.6 (±2.4), social domain 14.8 (±3.4) and environmental domain 14.2 (±2.2). Outpatients with chronic pain reported the lowest scores on the WHOQOL-BREF when compared to the "musculoskeletal", "neurological" and "miscellaneous" groups. Increased age, lower education, living alone and unemployment had a negative impact on WHOQOL-BREF scores. Compared to the general Dutch population, rehabilitation outpatients scored, unadjusted for age, significantly lower difference for the physical domain 4.5 [95% confidence interval (CI) 4.2; 4.8], the environment domain 1.7 (95% CI 1.5; 2.0), the psychological domain 1.1 (95% CI 0.4; 1.2) and the social domain 0.4 (95% CI 0.0; 0.8). CONCLUSIONS: WHOQOL-BREF scores of rehabilitation outpatients are lower and differed significantly from normal values of a Dutch population in all four domains. Therefore, the WHOQOL-BREF can be used to measure the subjective impact of their disease or injury. The subjective impact of chronic pain was found to be particularly high.

Amputation and prosthetics of the lower extremity: The 2020 Dutch evidence-based multidisciplinary guideline.

BACKGROUND: Lower-limb amputations are rare but debilitating events in the lives of affected persons. Treatment of persons with amputation inherently involves many different health care professions at different stages leading to and after an amputation. There are prevailing clinical questions within the work field related to different facets of care including peri/postoperative aspects, prosthetic components, rehabilitation treatment, and health care processes. OBJECTIVES: To provide an up-to-date multidisciplinary evidence-based guideline for health care professionals involved in the treatment of persons with lower-limb amputation in the Netherlands. METHODS: Identification of key questions in a focus group, systematic review of the evidence (up to March 2019, using Embase and MEDLINE databases), and weighing considerations, culminating in clinical recommendations. RESULTS: Twelve key questions were formulated. Recommendations of two key questions were upheld in line with the previous 2012 guideline. Ten systematic literature searches were performed, leading to the inclusion of 59 studies. CONCLUSION: A summary of evidence-based conclusions, considerations, and recommendations of the 2020 guideline is presented.

Outcomes of amputation due to long-standing therapy-resistant complex regional pain syndrome type I.

OBJECTIVE: To assess long-term outcomes of amputation in patients with long-standing therapy-resistant complex regional pain syndrome type I (CRPS-I). DESIGN: Partly cross-sectional, partly longitudinal study. SUBJECTS: Patients who had amputation of a limb due to long-standing, therapy-resistant CRPS-I, at the University Medical Centre Groningen, The Netherlands, between May 2000 and September 2015 (n = 53) were invited to participate. METHODS: Participants were interviewed in a semi-structured way regarding mobility, pain, recurrence of CRPS-I, quality of life, and prosthesis use. Those who reported recurrence of CRPS-I underwent physical examination. RESULTS: A total of 47 patients (median age at time of amputation, 41.0 years; 40 women) participated. Longitudinal evaluation was possible in 17 participants. Thirty-seven participants (77%) reported an important improvement in mobility (95% confidence interval (95% CI) 63; 87%). An important reduction in pain was reported by 35 participants (73%; 95% CI 59; 83%). CRPS-I recurred in 4 of 47 participants (9%; 95% CI 3; 20%), once in the residual limb and 3 times in another limb. At the end of the study of the 35 participants fitted with a lower limb prosthesis, 24 were still using the prosthesis. Longitudinal evaluation showed no significant deteriorations. CONCLUSION: Amputation can be considered as a treatment for patients with long-standing, therapy-resistant CRPS-I. Amputation can increase mobility and reduce pain, thereby improving the quality of patients' lives. However, approximately one-quarter of participants reported deteriorations in intimacy and self-confidence after the amputation.

Development and validation of the Working Alliance Inventory Dutch version for use in rehabilitation setting.

Background: In rehabilitation, therapeutic alliance is associated with improvements in clinical outcomes. The Working Alliance Inventory (WAI) measures therapeutic alliance and is frequently used in rehabilitation research; however, it has not been validated for rehabilitation. Objectives: To determine content validity, internal consistency and construct validity of the Working Alliance Inventory Rehabilitation Dutch Version (WAI-ReD). Methods: In phase 1, content and face validity of the WAI-ReD was judged by professionals (n = 15) and in phase 2 by patients (n = 22). In phase 3, 14 hypotheses were tested in patients (n = 138) regarding: content validity (i.e., missing items, floor, and ceiling effects); internal consistency; and construct validity (i.e., factor structural testing correlations of WAI-ReD scores with Session Rating Scale (SRS), the Helping Alliance Questionnaire II (HAQ-II), and Visual Analog Scale of Pain (VASpain)). Results: After phase 1 and phase 2, the WAI-ReD was formulated and tested. Content validity; missing items were negligible. Ceiling effects were present in all domains. Internal consistency; Cronbach's α ranged between 0.804 and 0.927. Construct validity; correlations between WAI-ReD, SRS, HAQ-II, and VASpain fell within the hypothesized ranges. Conclusion: Eleven of the 14 hypotheses were not rejected confirming good clinimetric properties of the WAI-ReD. The WAI-ReD can be used in rehabilitation to measure therapeutic alliance.

Psychosocial factors associated with poor outcomes after amputation for complex regional pain syndrome type-I.

BACKGROUND: Amputation for longstanding therapy resistant complex regional pain syndrome type-I (CRPS-I) is controversial. Reported results are inconsistent. It is assumed that psychological factors play a role in CRPS-I. OBJECTIVE: To explore which psychological factors prior to amputation are associated with poor outcomes after amputation in the case of longstanding therapy resistant CRPS-I. METHODS: Between May 2008 and August 2015, 31 patients with longstanding therapy resistant CRPS-I were amputated. Before the amputation 11 psychological factors were assessed. In 2016, participants had a structured interview by telephone and filled out questionnaires to assess their outcome. In case of a perceived recurrence of CRPS-I a physician visited the patient to examine the symptoms. Associations between psychological factors and poor outcomes were analysed. RESULTS: Four of the 11 psychological factors were associated with poor outcomes. Regression analyses showed that change in the worst pain in the past week was associated with poor social support (B = 0.3, 95% confidence interval: 0.1;0.6) and intensity of pain before amputation (B = 2.0, 95% confidence interval 0.9;3.0). Patients who reported important improvements in mobility (n = 23) had significantly higher baseline resilience (median 79) compared to those (n = 8) who did not report it (median 69)(Mann-Whitney U, Z = -2.398, p = 0.015). Being involved in a lawsuit prior to amputation was associated with a recurrence in the residual limb (Bruehl criteria). A psychiatric history was associated with recurrence somewhere else (Bruehl criteria). CONCLUSION: Poor outcomes of amputation in longstanding therapy resistant CPRS-1 are associated with psychological factors. Outstanding life events are not associated with poor outcome although half of the participants had experienced outstanding life events.

Prosthesis satisfaction in lower limb amputees: A systematic review of associated factors and questionnaires.

BACKGROUND: Factors influencing patient satisfaction with a transtibial prosthesis have been studied fragmentarily. The aims of this systematic review were to review the literature regarding factors of influence on patient satisfaction with a transtibial prosthesis, to report satisfaction scores, to present an overview of questionnaires used to assess satisfaction and examine how these questionnaires operationalize satisfaction. METHODS: A literature search was performed in PubMed, Embase, PsycInfo, CINAHL, Cochrane, and Web of Knowledge databases up to February 2018 to identify relevant studies. RESULTS: Twelve of 1832 studies met the inclusion criteria. Sample sizes ranged from 14 to 581 participants, mean age ranged from 18 to 70 years, and time since amputation ranged from 3 to 39 years. Seven questionnaires assessed different aspects of satisfaction. Patient satisfaction was influenced by appearance, properties, fit, and use of the prosthesis, as well as aspects of the residual limb. These influencing factors were not relevant for all amputee patients and were related to gender, etiology, liner use, and level of amputation. No single factor was found to significantly influence satisfaction or dissatisfaction. Significant associations were found between satisfaction and gender, etiology, liner use, and level of amputation. CONCLUSION: Relevance of certain factors for satisfaction was related to specific amputee patient groups. Questionnaires assessing satisfaction use different operationalizations, making comparisons between studies difficult.

Patients First: Toward a Patient-Centered Instrument to Measure Impact of Chronic Pain.

Background: Numerous instruments are available to measure the impact of chronic pain, yet most have been developed with little or no patient involvement. This study seeks to start bridging that gap by determining which health aspects or attributes (to be included in a future instrument) are considered most important by people with chronic pain. Objective: The goal of this study was to reveal which attributes reflecting impact of chronic pain are considered most important by people with chronic pain and to analyze differences in importance according to gender, age categories, diagnostic subgroups, and pain intensity categories. Design: This study used a sequential explanatory mixed-methods design: literature search, focus group meetings, and online survey. Methods: First, a literature search was performed to identify the attributes in existing instruments. In 68 instruments meeting inclusion criteria, 155 unique attributes were identified, 85 of which remained after applying the exclusion criteria. Second, 2 focus group meetings, with 6 and 4 patients, respectively, were held to verify that no attributes had been missed. Three attributes were subsequently added. Third, individuals with chronic pain were then sent an online survey through several patient organizations. Results: A total of 939 patients were asked to select the 8 attributes they deemed most important, which resulted in the following list: fatigue, social life, cramped muscles, sleeping, housekeeping, concentration, not being understood, and control over pain. The importance assigned to these 8 attributes varied slightly according to age, gender, and diagnostic subgroup. Limitations: Participation rate could not be established because of the online survey. Conclusions: Attributes reflecting impact of chronic pain deemed most important by patients are revealed. Importance of impact differs according to subgroups. The "patients-first" methodology used here revealed attributes that were not comprehensively covered in currently available instruments for measuring the impact of chronic pain.

Subjective cognitive dysfunction in rehabilitation outpatients with musculoskeletal disorders or chronic pain.

BACKGROUND: Rehabilitation patients, without brain damage, sometimes complain about poor concentration and problems with their memory. The magnitude and associations, of this cognitive dysfunction, with different factors is unclear. AIM: To determine the magnitude of cognitive dysfunction in rehabilitation outpatient and to explore its associations with patient characteristics, diagnosis, surgery, pain, stress, anxiety and depression. DESIGN: Cross-sectional. SETTING: Rehabilitation outpatients. POPULATION: Between July 2009 and January 2012, 274 rehabilitation outpatients were included and divided in 8 different groups through diagnosis. METHODS: Cognitive functioning was assessed using the cognitive failure questionnaire and compared with the general Dutch population. Associations of gender, age, diagnosis, recent surgery, pain and stress coping ability with cognitive function was explored. Mediation of depression and anxiety was explored. RESULTS: The rehabilitation patients had a significantly higher score on the CFQ (mean 35.9±13.4) when compared to the general Dutch population (mean 31.8±11.1). Mean difference is 4.1, 95% confidence interval 2.60 to 5.60. In the stepwise linear regression analysis only gender, diagnosis and stress coping ability were significantly associated. A significant mediation effect was found of anxiety (P≤0.001) and depression (P≤0.005) between stress coping ability and cognitive function. CONCLUSIONS: Rehabilitation outpatients experience more cognitive problems in comparison to the general Dutch population. Reported dysfunction of cognition in rehabilitation outpatients are associated with stress coping ability and for a small amount to gender and diagnosis. The association of stress coping ability and cognitive dysfunction is mediated by depression and anxiety. Women tend to report more dysfunctional cognition compared to men. Patient characteristics, surgery and experienced pain have no significant influence on the experienced cognitive dysfunction. CLINICAL REHABILITATION IMPACT: Cognitive problems reported by patients should be addressed by adapting the rehabilitation program, for instance write down instructions, repeat explanations and take more time for instructions. Cognitive problems in rehabilitation patients without brain damage is probably a stress coping problem and can be addressed by boosting resilience. Targeting depression or anxiety is another option of treatment cognition if those are mediating between stress coping and cognitive problems.

Biomedical and psychosocial factors influencing transtibial prosthesis fit: a Delphi survey among health care professionals.

PURPOSE: We aimed to reach consensus among professionals caring for prosthesis users, on definitions of biomedical and psychosocial factors, to assess their influence on fit of transtibial prosthesis and to identify new factors. METHOD: A three-round, internet-based, Delphi survey was conducted among experts recruited via the Dutch National Amputee and Prosthesis Work Group. The main outcome measure was consensus among care professionals on statements concerning new and presented biomechanical and psychosocial factors that influence transtibial prosthesis fit. RESULTS: Fifty-four experts participated in the survey, and consensus was reached on 67% (46/69) of all statements. Consensus on statements relevant for good prosthesis fit was reached in most of the statements concerning psychosocial factors and on statements concerning the biomedical factors "prosthesis support and suspension". Least consensus was reached on statements concerning the biomedical factor "skin problems and pain in the residual limb". CONCLUSIONS: Biomedical and psychosocial factors influence transtibial prosthesis fit. Consensus was reached among care professionals in a majority of the presented statements concerning these factors. Implications for Rehabilitation Prosthesis fit and comfort is suboptimal in many prosthesis users. Both biomedical and psychosocial factors influence fit. Biomedical and psychosocial factors should be checked during transtibial prosthesis prescription to achieve and maintain an optimal fit. Consensus on many factors influencing prosthesis fit is achieved among care professionals. Consensus was largest regarding prosthesis support and suspension and least regarding skin problems and pain in the residual limb. This consensus contributes to systematic assessment of prosthesis fit.

Dutch evidence-based guidelines for amputation and prosthetics of the lower extremity: Amputation surgery and postoperative management. Part 1.

BACKGROUND: Surgeons still use a range of criteria to determine whether amputation is indicated. In addition, there is considerable debate regarding immediate postoperative management, especially concerning the use of 'immediate/delayed fitting' versus conservative elastic bandaging. OBJECTIVES: To produce an evidence-based guideline for the amputation and prosthetics of the lower extremities. This guideline provides recommendations in support of daily practice and is based on the results of scientific research and further discussions focussed on establishing good medical practice. Part 1 focuses on amputation surgery and postoperative management. STUDY DESIGN: Systematic literature design. METHODS: Literature search in five databases. Quality assessment on the basis of evidence-based guideline development. RESULTS: An evidence-based multidisciplinary guideline on amputation and prosthetics of the lower extremity. CONCLUSION: The best care (in general) for patients undergoing amputation of a lower extremity is presented and discussed. This part of the guideline provides recommendations for diagnosis, referral, assessment, and undergoing amputation of a lower extremity and can be used to provide patient information. CLINICAL RELEVANCE: This guideline provides recommendations in support of daily practice and is based on the results of scientific research and further discussions focussed on establishing good medical practice.

Dutch evidence-based guidelines for amputation and prosthetics of the lower extremity: Rehabilitation process and prosthetics. Part 2.

BACKGROUND: A structured, multidisciplinary approach in the rehabilitation process after amputation is needed that includes a greater focus on the involvement of both (para)medics and prosthetists. There is considerable variation in prosthetic prescription concerning the moment of initial prosthesis fitting and the use of replacement parts. OBJECTIVES: To produce an evidence-based guideline for the amputation and prosthetics of the lower extremities. This guideline provides recommendations in support of daily practice and is based on the results of scientific research and further discussions focussed on establishing good medical practice. Part 2 focuses on rehabilitation process and prosthetics. STUDY DESIGN: Systematic literature design. METHODS: Literature search in five databases and quality assessment on the basis of evidence-based guideline development. RESULTS: An evidence-based multidisciplinary guideline on amputation and prosthetics of the lower extremity. CONCLUSION: The best care (in general) for patients undergoing amputation of a lower extremity is presented and discussed. This part of the guideline provides recommendations for treatment and reintegration of patients undergoing amputation of a lower extremity and can be used to provide patient information. CLINICAL RELEVANCE: This guideline provides recommendations in support of daily practice and is based on the results of scientific research and further discussions focussed on establishing good medical practice.

Resilience in patients with amputation because of Complex Regional Pain Syndrome type I.

PURPOSE: Although controversial, an amputation for longstanding and therapy-resistant Complex Regional Pain Syndrome Type I (CRPS-I) may improve quality of life and pain intensity. Resilience, the way people deal with adversity in a positive way may be related to these positive outcomes. This study focused on the relationship between resilience and post-amputation outcomes, i.e. quality of life, pain and recurrence of CRPS-I and psychological distress. METHOD: Twenty-six patients with an amputation related to CRPS-I filled in the Connor-Davidson Resilience Scale (CD-RISC), World Health Organisation -- Quality of life Assessment (WHOQOL-Bref) and the Symptom Checklist-90 Revised (SCL-90-R). An interview was conducted and a physical examination performed. Results were compared with reference groups from literature and a control group from the outpatient rehabilitation clinic at our medical center. RESULTS: Resilience correlated significantly with all domains of the WHOQOL-Bref (ρ ranged from 0.41 to 0.72) and negatively with all domains of the SCL-90-R (ρ ranged from -0.39 to -0.68). Patients with an amputation because of CRPS-I have higher scores on resilience and quality of life than the control group. Resilience was lower in patients who reported CRPS-I symptoms compared to those who did not. CONCLUSIONS: The results confirmed our hypothesis that patients with an amputation because of CRPS-I who have a higher resilience also have a higher quality of life and experience lower psychological distress. The prognostic value of resilience in this patient group requires further research. Implications for Rehabilitation Until characteristics of patients with positive quality of life outcome have been further unraveled, amputation for CRPS-I should only be performed in expertise centers. Resilience, the process of adapting well in the face of adversity, should be further explored in Rehabilitation Medicine research in general. Measurement of resilience should be a standard procedure when patients with CRPS-I request an amputation. Improving resilience of patients in in- and outpatient rehabilitation clinics might be an additional treatment in rehabilitation care.

Informed Decision-Making Regarding Amputation for Complex Regional Pain Syndrome Type I.

BACKGROUND: Literature on complex regional pain syndrome type I (CRPS-I) discussing the decision to amputate or not, the level of amputation, or the timing of the amputation is scarce. We evaluated informed decision-making regarding amputation for CRPS-I. METHODS: We describe our findings in a retrospective study of the decision-making process of thirty-six patients who underwent amputation for CRPS-I at our university medical center from 2000 to 2012. Additionally, we present the incidents preceding the CRPS-I, the reasons for and the levels of the amputation, and the outcomes after the amputations. RESULTS: Team members and the patient decided together whether or not to amputate and the level of amputation. Issues such as level of pain or allodynia, infection, desired length of the residual limb, joint range of motion, strength of all extremities, ability to use walking aids, and psychological "green, yellow, and red flags" were weighed in this process. There were no complications during the amputation surgery, a 22% rate of complications (infection in all but one patient) immediately postoperatively (reamputation not required), a 72% rate of phantom pain immediately after or within the first three months after the amputation, and a 77% rate of phantom pain more than one year after the amputation. CONCLUSIONS: Informed decision-making regarding amputation for CRPS-I remains a complex process for which little evidence is available to support patient choices; patient-specific outcomes are not predictable. However, amputation should not be ignored as a treatment option for long-standing therapy-resistant CRPS-I. LEVEL OF EVIDENCE: Therapeutic Level IV. See Instructions for Authors for a complete description of levels of evidence.

Amputation for long-standing, therapy-resistant type-I complex regional pain syndrome.

BACKGROUND: Some patients with long-standing, therapy-resistant type-I complex regional pain syndrome consider an amputation. There is a lack of evidence regarding the risk of recurrence of the pain syndrome and patient outcomes after amputation. The goal of the present study was to evaluate the impact of an amputation on pain, participation in daily life activities, and quality of life as well as the use of a prosthesis and the risk of recurrence of the pain syndrome in patients with long-standing, therapy-resistant type-I complex regional pain syndrome. METHODS: From May 2000 to October 2008, twenty-two patients underwent an amputation of a nonfunctional limb at our institution because of long-standing, therapy-resistant type-I complex regional pain syndrome. Twenty-one of these patients were included in our study. The median age was forty-six years (interquartile range [IQR], thirty-seven to fifty-one years), the median duration of the complex regional pain syndrome was six years (IQR, two to ten years), and the median interval between the amputation and the study was five years (IQR, three to seven years). A semistructured interview was conducted, physical examination of the residual limb was performed, and the patients completed two questionnaires. RESULTS: Twenty patients (95%) reported an improvement in their lives. Nineteen patients (90%) reported a reduction in pain, seventeen patients (81%) reported an improvement in mobility, and fourteen (67%) reported an improvement in sleep. Eighteen of the twenty-one patients stated that they would choose to undergo an amputation again under the same circumstances. Ten of the fifteen patients with a lower-limb amputation and one of the six with an upper-limb amputation regularly used a prosthesis. The type-I complex regional pain syndrome recurred in the residual limb of three patients (14%) and symptoms recurred in another limb in two patients (10%). CONCLUSIONS: Amputation may positively contribute to the lives of patients with long-standing, therapy-resistant type-I complex regional pain syndrome. Patients were likely to use a prosthesis after a lower-limb amputation. The risk of recurrence of the type-I complex regional pain syndrome was 24%.