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Background: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. Aim: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. Design: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. Setting/participants: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. Results: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. Conclusions: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.

BackgroundSuch patient-reported outcome measures (PROMs) and patient-centered outcome measures as the Integrated Palliative Care Outcome Scale (IPOS), Phase of Illness, and IPOS Views on Care (IPOS VoC), facilitate patient-centered care and help improve quality. To ensure sustainability, implementation and usage should be adapted according to setting. When settings involve several distinct teams that differ in terms of views and working practices, it is more difficult to integrate outcome measures into daily care. The ELSAH study aimed to learn how health professionals working in specialized outpatient palliative care (SOPC) viewed the use of these outcome measures in daily care, and what they express is needed for successful sustainable, state-wide application.MethodsWe used a parallel mixed-methods design involving three focus groups (n = 14) and an online-survey based on normalization process theory (n = 76). Most participants were nurses and physicians from 19 SOPC-teams in Hesse, Germany. We used a triangulation protocol including convergence coding matrices to triangulate findings.ResultsThe majority of health professionals were able to integrate the outcome measures into their working lives and said that it had become a normal part of their day-to-day work. To ensure their sustainable integration into daily care, the motivation and concerns of health professionals should be taken into consideration. Health professionals must clearly recognize how the measures help improve daily care and quality evaluation.ConclusionsTo implement the outcome measures in a number of teams, it will be necessary to take individual team characteristics into account, because they influence motivation and concerncs. Further, it will be necessary to offer opportunities for them to engage in peer support and share information with other teams. The sustainable use of outcome measures in SOPC will require continuous support within each team as well as across teams. When several distinct teams are working in the same setting, a cross-team coordination unit can help to coordinate their work efficiently.Trial registrationGerman Clinical Trials Register DRKS-ID: DRKS00012421;www.germanctr.de/DRKS00012421

ObjectiveIn Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents’ experiences and their demands of collaboration with SOPPC teams.MethodsWe conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data.ResultsParents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents’ need for specialised professional assistance and their simultaneous empowerment by SOPPC teams.ConclusionsParents’ perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.

Background Making decisions about PSA screening tests is challenging, as it requires both knowledge of the possible benefits and harms of screening and an individual assessment of the patient's values. Our research explores how much and what information men perceive to be necessary with regard to screening for prostate cancer. Objective To explore men's information and associated needs for decision making in PSA testing. Design Qualitative interview study. Setting and participants We interviewed 32 men (aged 55‐69) about their decision making on PSA screening following counselling with a Decision Aid at their GP’s or urologist's practice in Germany. Main Outcome Measures Men's expressed needs for decision making in PSA testing. Methods All interviews were transcribed verbatim and analysed by framework analysis. Results Comprehensive pre‐screening counselling is needed. For the men in our study, information about test (in)accuracy, the benefit‐harm balance and consequences of the test were relevant and surprising. Additional needs were for interpretation support, a take‐home summary and time for deliberation. For several men, their physician's attitude was of interest. After being well‐informed, most men felt empowered to make a preference‐based decision on their own. Discussion Men were surprised by what they learned, especially regarding the accuracy and possible harms of screening. There is large variation in the breadth and depth of information needed, and some controversy regarding the consequences of testing. Conclusion and patient contribution A core set of information should be offered before men make their first PSA screening decision. Information about biopsy and associated side‐effects could follow in a short form, with details only on request. Knowledge about a high rate of false‐positive test results beforehand might help men handle a suspicious test result.

Background The use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC. Methods Five SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures. Results We found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording. Conclusions SOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be. Trial registration May 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421.

In Germany, people with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). Requirements, delivery and goals of SOPC have been laid down by the Federal Joint Committee in a nationwide guideline. The guideline emphasizes the need to consider the special needs of children and adolescents with life-limiting conditions. A specification of these needs has so far been missing. The focus group discussion presented here aimed at investigating similarities and differences between the specialized outpatient palliative care of adults (SOPC for adults) on the one hand, and children and adolescents (SOPPC) on the other hand, from the perspective of health care professionals in order to further define specifics of SOPPC.In three focus group discussions a total of 11 nursing and 8 medical professionals from SOPC for adults and SOPPC engaged in face-to-face discussions on the similarities and differences of both care forms. Discussions were designed openly and stimulated with three guiding questions only. Focus group discussions were audio-recorded, transcribed verbatim and analyzed by thematic analysis supported by the software MAXQDA.Within the following six themes, similarities as well as key differences between SOPC and SOPPC were identified: the participants discussed diseases, coverage area and locations, therapy goals, the psychosocial care situation, the role of relatives and end-of-life care. From the participants' perspective different underlying diseases constitute a main difference that causes further differences in the expertise required. Furthermore, SOPC for adults and SOPPC differ in the dimension of areas covered by one team, the number of patients per team and the reasons for SOPC visits. Differences in terminal care and the mourning process within the team became evident. Some similarities existed regarding goal-setting, psychosocial care and the role of relatives, but concrete patterns and the importance of these aspects differed because a particularly complex and emotional communication is required when a child is dying.From the perspective of health care professionals, SOPC for adults and SOPPC differ with regard to underlying diseases as well as care patterns such as collaboration with relatives and their need for psychosocial support. Therefore, the care for children, adolescents and young adults with life-limiting conditions and pediatric diseases all over Germany should be delivered within the frame of an independent care structure by teams whose members possess specific pediatric expertise.

Background: Specialised palliative home-care supports patients with life-limiting diseases in their familiar surroundings. The number of palliative care teams and patients being cared for is increasing worldwide. To assess and improve quality, it is needed to understand, how specialised palliative home-care can be provided successfully. For this purpose we examined the views of all involved stakeholders. Aim: To identify the issues that patients, their relatives and involved health professionals view as important in ensuring the success of specialised palliative home-care. Design: We used a qualitative design based on participant observations, interviews and focus groups following the principles of a Grounded Theory approach. Setting/participants: All specialised palliative home-care teams ( n = 22) caring for adults in Hesse, Germany, participated. We conducted participant observations ( n = 5), and interviewed patients ( n = 14), relatives ( n = 14) and health professionals working in or collaborating with specialised palliative home-care ( n = 30). We also conducted focus groups ( n = 4) with health professionals including a member check. Results: Successful specialised palliative home-care needs to treat complex symptoms, and provide comprehensive care including organisation of care, involving relatives and addressing issues of death and dying. Sense of security for patients and relatives is key to enable care at home. Care delivery preferences include a focus on the quality of relationships, respect for individuality and the facilitation of self-determination. Conclusions: Consideration of the identified key issues can help to ensure successful specialised palliative home-care. Knowledge of these should also be considered when researching and assessing quality of care. Trial registration: German Clinical Trials Register DRKS-ID: DRKS00012421; http://www.germanctr.de .

Background The Central Sensitization Inventory (CSI) is a screening tool designed to detect symptoms related to Central Sensitization (CS) and Central Sensitivity Syndromes (CSS) by measuring the degree of related phenomena. The objective of this study was to create a German, culturally-adapted version of the CSI and to test its psychometric properties. Methods A German version of the CSI (CSI-GE) was developed, culturally-adapted, and pretested for comprehensibility. The psychometric properties of the resulting version were validated in a clinical study with chronic pain and pain-free control subjects. To assess retest reliability, the CSI-GE was administered twice to a subgroup of patients. Structural validity was tested using factor analyses. To investigate construct validity a hypotheses testing approach was used, including (1) correlations between the CSI-GE and several other well-established questionnaires as well as (2) an investigation of the CSI-GE discriminative power between different subgroups of participants believed to have different degrees of CS. Results The CSI-GE showed excellent reliability, including high test-retest characteristics. Factor analyses confirmed a bi-factor dimensionality as has been determined previously. Analysing construct validity 6 out of 11 hypotheses (55%) were met. CSI-GE scores differentiated between subgroups according to expectations. Correlations between CSI-GE scores and other questionnaires suggested that none of the correlated constructs was identical, but there was overlap with other questionnaires based on symptom load. Several correlations did not fit with our current understanding of CS. Conclusion The CSI-GE appears to be a reliable tool for measuring CS/CSS-related symptomatology. Whether this implies that the CSI-GE measures the degree of CS within an individual subject remains unknown. The resulting score should be interpreted cautiously until further clarification of the construct. Supplementary Information The online version contains supplementary material available at 10.1186/s12891-021-04481-5.

Background In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The “Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)” study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). Methods/Design The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). Discussion This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients. Trial registration Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).

Background and Purpose: Fear-avoidance beliefs in older adults with chronic low back pain (CLBP) can lead to disability. Graded exposure-based active physical therapy could be an option to enhance physical ability in older patients with CLBP. The purpose of this study was to develop a standardized graded exposure treatment according to the fear-avoidance model of musculoskeletal pain for older patients with CLBP and to examine its effectiveness and feasibility in the German health care system. Methods: The study represents a phase I/phase II trial of a complex intervention. Taking a first step into the hierarchy of growing empirical evidence, a prospective 1-factor observational study was conducted with repeated measurements 1 week before and within 2 weeks after the intervention. Three physical therapists, who completed an introductory workshop, provided the treatment in the form of individual therapies. Sixteen participants 65 years or older with CLBP and perceived physical limitations were recruited. Four patient-reported outcome measures and semistructured interviews were conducted. The primary outcome was physical ability measured with the Hanover Functional Ability Questionnaire. Secondary outcomes were the numerical pain rating scale, and an age-specific and adapted 11-item short-form of the Patient Anxiety Symptom Scale, the KVS-D 65+, which quantified catastrophizing and avoidance beliefs. Fear of falling was measured with the Falls Efficacy Scale-International. For the analysis, Wilcoxon signed-rank test for paired samples and an a level of .05 were chosen. For the qualitative evaluation, semistructured interviews were conducted with the patients and physical therapists explored indicators of feasibility such as demands, acceptability, satisfaction, adaptation needs, and implementation. For content analysis, codes were primarily derived deductively and complemented by inductively derived new themes. Results: A significant increase in physical ability after the treatment was observed with an effect size (ES) of 0.95 (P = .008). With regard to secondary outcomes, there was a statistically signifi cant decrease in pain intensity (P = .029) and a reduction in catastrophizing (ES = 0.91; P = .021) and avoidance beliefs (ES = 1.37; P = .001). The interviews revealed good acceptance and satisfaction of the treatment by the patients and physical therapists. Conclusion: On the whole, the treatment appears effective and feasible. Apart from the benefits achieved by the participants, the study provides a basis for designing future studies at a higher level of evidence.

Background. Persistent pain is highly prevalent in older adults and can lead to functional limitations in activities of daily living, and to psychosocial distress. There is a lack of established active therapy programs, especially for older adults with chronic pain. Objectives. To develop a graded activity program and to evaluate its feasibility within a pilot study. Design. Phase I/phase II trial of a complex intervention. A mixed methods design was chosen to evaluate the feasibility, acceptability, and preliminary evidence of effectiveness. Subjects and Setting. Several experts participated in the program development. Sixteen community-dwelling older adults (73.9 ± 5.9 years on average) with chronic low back pain and three primary care physical therapists attempted the program. Methods. Guided semi-structured interviews were conducted with all patients and therapists and used a content-analytic approach. Measurements of self-rated functional status (HFAQ), average pain (NRS), falls self-efficacy (FES-I), and catastrophizing and avoidance beliefs (CAS-D 65+) were applied at baseline and after the intervention. Results. The interviews revealed high acceptance, satisfaction, and practicality. Besides improvements in function and pain, patients mentioned more positive attitudes towards pain, activity, and self-confidence. There was a clinically relevant increase in physical function by 20.3%, a decrease in pain intensity, and a reduction in catastrophizing and avoidance behavior. Conclusion. This graded activity program demonstrated feasibility and high acceptance in aged individuals and therapists. Future studies with larger samples must confirm effectiveness. The principles also appear applicable to other chronic pain conditions. The program could easily be implemented in routine primary care.

Background In Germany, patients suffering from life-limiting conditions are eligible for specialized outpatient palliative care (SOPC). Evaluation of the quality of this service lacks currently integration of patient-relevant outcomes. There is also no scientific consensus how to prove quality of care in the special context of SOPC adequately. Existing quality reports are primarily based on descriptive structural data which do not allow for estimation of process quality or result quality. The ELSAH study (‘Evaluation of Specialized Outpatient Palliative Care in the German state of Hesse’) aims to choose - or, if necessary, to adopt - to evaluate and to implement a suit of measures to assess, evaluate and monitor the quality of specialized, home-based palliative care. Methods All 22 SOPC teams providing their services in the state of Hesse, Germany, participate in the ELSAH study. The study is divided in two phases: a preparation phase and a main study phase. Based on the findings of the preparation phase we have chosen a preliminary set of instruments including the Integrated Palliative Outcome Scale, Views on Care, Zarit Burden Interview, Phase of Illness, Goal Attainment Scaling, Eastern Cooperative Oncology Group Performance Status, Consumer Quality Indices Palliative Care and Sense of Security in Care. During the main study phase, we will use a mixed-methods approach to evaluate the instruments’ psychometric properties (reliability, validity, feasibility and practicability), to identify barriers, facilitators and limitations of their routine use and to explore how their use affects the care within the SOPC setting. Discussion At the end of this study, an outcome- and patient-centered, validated measurement approach should be provided, adapted for standardized evaluations in SOPC across patient groups, palliative care services and regions nationwide. The standardized application of instruments should allow for making valid statements and comparisons of health care quality in SOPC based on process- and outcome-evaluation rather than relying on structural data only. Moreover, the instruments might directly influence the care of patients in palliative situations. Trial registration German Clinical Trials Register (DRKS-ID: DRKS00012421).

Background Although there are many special exercise-based therapy approaches for the working population suffering chronic low back pain, similar programmes for older individuals are rare. Objectives To summarise all evaluated physical therapy approaches, and assess the effects on older people with chronic low back pain. Data sources Medline, CINAHL, Cochrane, Embase, PEDro, PsychINFO and Psyndex. Study selection/eligibility Age ≥ 65 years, subacute or chronic non-specific low back pain of ≥6 weeks’ duration, and a physical therapy approach. Study appraisal and synthesis methods Study selection, data extraction, and assessment of methodological quality and clinical relevance were performed independently by two reviewers. As there were only a few controlled trials and wide heterogeneity in observation periods and outcome measures, pooling of data was not feasible. Therefore, the results are presented descriptively. Results In total, nine studies were included; six related to mixed physiotherapy modalities, one related to strength training, and two related to endurance training. Low-quality evidence suggests that physical therapy modalities are associated with a small-to-moderate reduction in pain and a small improvement in function. Limitations The results must be interpreted with caution due to poor methodological quality. Conclusion and implications of key findings Few studies have been performed in this highly relevant and growing age group. It is not possible to recommend one particular modality or programme; as such, prescriptions should reflect patients’ preferences and local conditions. Further research of higher methodological quality is needed urgently.