Background: The high incidence of pain associated with end-stage cancers indicates the need for a new approach to understanding how and why patients, caregivers, and clinicians make pain management choices.
Aims: To provide pilot data and preliminary categories for developing a middle-range nursing theory and framework through which to scrutinize and identify problematic processes involved in management of poorly controlled pain for home hospice patients, caregivers, and nurses, the “caring triad.”
Design: A qualitative pilot study using constructivist grounded theory methodology to answer the question, “In the context of hospice, what are the social processes occurring for and between each member of the hospice caring triad and how can these processes be categorized?”
Settings: Home hospice care.
Participants/Subjects: hospice patients experiencing cancer pain, family caregivers, hospice nurses.
Methods: From a sample of triads including hospice patients, caregivers and nurses, data were collected at observational visits, individual interviews, and a focus group over the course of each triad's study involvement. We used recursive coding processes to interpret data.
Results: Three preliminary categories of social processes were identified: Pain Meaning, Working Toward Comfort, and Bridging Pain; and six subcategories: perceiving pain and discomfort, knowing what to do, planning activities, negotiating a pain plan, talking about pain, and being together in pain.
Conclusions: As illustrated in the caring triad cases presented, this study moved the management approach of pain from a dichotomous realm of nurse-patient, to the more naturalistic realm for home hospice of nurse-patient-caregiver. In analyzing social processes within and across triad members, we identified categories of impact to target assessment, intervention, and education to improve pain outcomes.
Background: Crises that occur in home hospice care affect family caregivers’ satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes.
Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers.
Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined.
Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization.
Measurements: Participants were asked to identify any crisis—defined as a time of intense distress due to a physical, psychological, and/or spiritual cause—they or the patient experienced, while receiving home hospice care.
Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis.
Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.
Background: Few studies have estimated planned home deaths compared to actual place of death in a general population or the longitudinal course of home nursing services and associations with place of death. We aimed to investigate trajectories of nursing services, potentially planned home deaths regardless of place of death; and associations of place of death with potentially planned home deaths and nursing service trajectories, by analyzing data from the last 90 days of life.
Methods: A retrospective longitudinal study with data from the Norwegian Cause of Death Registry and National registry for statistics on municipal healthcare services included all community-dwelling people who died in Norway 2012–2013 (n = 53,396). We used a group-based trajectory model to identify joint trajectories of home nursing (hours per week) and probability of a skilled nursing facility (SNF) stay, each of the 13 weeks leading up to death. An algorithm estimated potentially planned home deaths. We used a multinomial logistic regression model to estimate associations of place of death with potentially planned home deaths, trajectories of home nursing and short-term SNF.
Results: We identified four home nursing service trajectories: no (46.5%), accelerating (7.6%), decreasing (22.1%), and high (23.5%) home nursing; and four trajectories of the probability of a SNF stay: low (69.0%), intermediate (6.7%), escalating (15.9%), and increasing (8.4%) SNF. An estimated 24.0% of all deaths were potentially planned home deaths, of which a third occurred at home. Only high home nursing was associated with increased likelihood of a home death (adjusted relative risk ratio (aRRR) 1.29; CI 1.21–1.38). Following any trajectory with elevated probability of a SNF stay reduced the likelihood of a home death.
Conclusions: We estimated few potentially planned home deaths. Trajectories of home nursing hours and probability of SNF stays indicated possible effective palliative home nursing for some, but also missed opportunities of staying at home longer at the end-of-life. Continuity of care seems to be an important factor in palliative home care and home death.
BACKGROUND: While early-integrated palliative home care (PHC) is believed to be beneficial for COPD patients, trials testing this hypothesis are rare and show inconclusive results.
AIM: To test feasibility, acceptability and preliminary effectiveness of early-integrated PHC for end-stage COPD.
METHOD: Testing a six-month early-integrated PHC pilot RCT given by PHC nurses for end-stage COPD with five components: (1) pre-inclusion COPD support training for PHC nurses; (2) monthly PHC visits; (3) leaflets on coping mechanisms; (4) a protocol on symptom management and support, a care and action plan; (5) integration of PHC and usual care through reporting and communication mechanisms. Patient-reported outcomes were assessed six-weekly. Participants and healthcare professionals involved were interviewed.
RESULTS: Of 70 eligible patients, 39 (56%) participated (20:19 intervention-control) and 64% completed the trial. A patient received on average 3.4 PHC visits, mainly for disease insight, symptom management and care planning. Nurses distributed all reports but hardly connected with health professionals except general practitioners (GPs); 8/10 interviewed patients referred to the psychosocial support, breathing exercises and care decisions as helpful. Some GPs criticised PHC being given too early but pulmonologists and PHC nurses did not. Effectiveness analysis showed no overall intervention effect for the outcomes, but between baseline and week 24 fewer hospitalisations in the control group (p=0.03) and a trend of higher perceived quality of care in the intervention group (p=0.06) was found. A clinically relevant difference was observed at week 24 for health-related quality of life in favour of the control group.
CONCLUSION: Our intervention on early-integrated PHC for end-stage COPD is feasible and accepted but did not yield the anticipated preliminary effectiveness. Before moving to a Phase III-trial, enhanced coordination of care, more GP involvement, more intensive training for PHC nurses in COPD support and revision of the trial design, e.g. of targeted outcomes in line with individual patient goals and care preferences should be improved.
De nombreuses zones rurales éloignées des hôpitaux voient le nombre de leurs médecins généralistes diminuer, ce qui complique l’accès aux soins pour les patients de ces territoires. Des solutions pertinentes existent cependant, comme l’illustre l’expérience du réseau Dousopal, en Normandie, qui contribue, en équipe avec les soignants du domicile, à organiser un accompagnement en soins palliatifs dans des conditions optimales pour tous.
Au Centre Mère et Enfant de la Fondation Chantal Biya au Cameroun, l’incidence annuelle des cancers pédiatriques est de 150 nouveaux cas. Tous les cancers de l’enfant sont représentés. Trente pour cent sont incurables au diagnostic, 20 % des patients abandonnent le traitement et 90 % arrivent à un stade avancé de la maladie. Les raisons majeures qui sont très souvent avancées par les familles pour justifier l’interruption des soins sont : le manque de moyens financiers et le recours à d’autres thérapies. Or, entre les diagnostics très tardifs, qui sont la conséquence des stades avancés de la maladie, et les déterminants socioculturels, il est nécessaire de mettre sur pied un système qui permette de résorber ces écueils. Ainsi, notre réflexion propose les soins palliatifs pédiatriques à domicile comme réponse à la discontinuité des soins en oncopédiatrie au Cameroun.
It was recently estimated that only 30% of Canadians have reliable access to palliative care services. Allocating funding to improve access to skilled palliative care in rural or remote settings is challenging in an era of increasing demand and competing priorities, underscoring the need for innovative palliative care service delivery that optimizes use of low-cost readily available technology. This study evaluated the use of the FaceTime application on an Apple iPad to improve timely access to physician consultation for home-based palliative care patients living in rural Nova Scotia. Patients enrolled with the Hants Community Palliative Care Program who consented to participate (n = 15) received regular home-based visits from a palliative care nurse who used the FaceTime application to connect with the palliative care physician in Halifax. Participants were then asked to complete a questionnaire evaluating their experience. Results indicated that using FaceTime through cellular data networks is feasible in rural areas of Nova Scotia. All participants reported that both the audio and visual quality allowed them to communicate easily with the doctor, and no consultations were terminated due to network instability. Patients also found the FaceTime encounter highly acceptable with 86% reporting they were “satisfied” or “very satisfied”; 100% stated that their medical concerns were addressed and 100% were willing to use FaceTime again. The results add to the limited literature exploring the application of telehealth in palliative care and demonstrating the utility of low-cost commonly used technology to improve access to palliative care in underserviced areas.
BACKGROUND: In research on co-creation in nursing, a caring manner can be used to create opportunities for the patient to reach vital goals and thereby increase the patient's quality of life in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. Nurses must be extra sensitive to patients' and their relatives' needs with regard to ethical and existential issues and situations in home care encounters, especially at the end of life.
AIM: The aim of this study was to explore nurses' experiences of dealing with ethical and existential issues through co-creation at the end of life in palliative home care.
RESEARCH DESIGN, PARTICIPANTS, AND RESEARCH CONTEXT: The material consisted of texts from interviews with 12 nurses in a home care context. A hermeneutical approach was used, and the method was inspired by a thematic analysis.
ETHICAL CONSIDERATIONS: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Ethical permission to conduct the study was given from organizations that participated in this study.
FINDINGS: A main theme and four subthemes emerged. The main theme was "Deep co-creative relationships are needed to manage ethical and existential issues at the end of life." A model was created to display the findings and relations between ethical issues and situations and the need for a deep trustful caring relationship to solve problems in palliative home care.
DISCUSSION: Together, the themes can be considered as a tool for learning and dealing with ethical and existential issues at the end of life in home care. The themes can also be seen as a part of nurses' ethical competence within this context.
CONCLUSION: The quality of life at the end of life can be improved through co-creation, despite difficult ethical and existential issues. Future research should focus on co-creation from the patients' perspective.
CONTEXT: End-of-life (EOL) communication is a complex process involving the whole family and multiple care providers. Applications of analysis techniques that account for communication beyond the patient and patient/provider will improve clinical understanding of EOL communication.
OBJECTIVES: The objectives of the study were to introduce the use of social network analysis to EOL communication data and to provide an example of applying social network analysis to home hospice interactions.
METHODS: We provide a description of social network analysis to model communication patterns during home hospice nursing visits. We describe three social network attributes (i.e., magnitude, directionality, and reciprocity) in the expression of positive emotion among hospice nurses, family caregivers, and hospice cancer patients. Differences in communication structure by primary family caregiver across gender and time were also examined.
RESULTS: Magnitude (frequency) in the expression of positive emotion occurred most often between nurses and caregivers or between nurses and patients. Female caregivers directed more positive emotion to nurses, and nurses directed more positive emotion to other family caregivers when the primary family caregiver was male. Reciprocity (mutuality) in positive emotion declined toward day of death but increased on day of actual patient death. There was a variation in reciprocity by the type of positive emotion expressed.
CONCLUSION: Our example demonstrates that social network analysis can be used to better understand the process of EOL communication. Social network analysis can be expanded to other areas of EOL research, such as EOL decision making and health care teamwork.
Background: Specialized home-based palliative care (HPC) services aim at reducing the number of visits to emergency departments (EDs) and hospitalizations at end of life. In addition, it offers patients the possibility to die at home.
Objective: To investigate whether the last years' expansion of palliative care in Stockholm County, Sweden, reduced the health care resource use and/or increased the number of patients who died at home.
Design: This is a population-based study of all registered 2780 patients referred to HPC in 2015 in the Stockholm region. The majority of the patients (2087) had cancer, but 693 patients had chronic medical illness, most often cardiovascular and pulmonary diseases.
Results: HPC reduced visits to the ED and hospital admissions by 51% and 41%, respectively. The number of hospital admissions to the departments of oncology, medicine, and surgery was reduced, whereas admissions to palliative care units increased. For the 1773 patients alive after 90 days with HPC, the number of days spent in hospital reduced from 19,628 before HPC to 13,743 (30%) days with HPC. The most common place of death was at a specialized palliative care unit (48%), whereas 36% died at home.
Conclusions: HPC reduced emergency health care resource use for the majority of patients, despite patients having progressing disease. To improve the quality of end-of-life care, we need to make early integration of palliative care available for a larger number of patients. In addition, we have to improve care pathways, especially for patients with gastrointestinal and lung cancer, who continued to be frequently admitted to hospital.
Background: Home hospice is designed to provide comfort to patients at the end of their life and hospital readmission is incongruent with this goal.
Objective: The purpose of this study was to investigate the incidence of and characteristics associated with hospital readmissions from home hospice over a two-year period.
Design/Subjects: This was a retrospective cohort study of 705 inpatients discharged from a quaternary academic medical center to home hospice from January 1, 2016 to December 31, 2017.
Measures: The primary outcome was incidence of hospital readmission after discharge to home hospice. Multivariate regression with stepwise forward selection was used to identify characteristics associated with readmission.
esults: The incidence of readmission was found to be 10.50% (n = 74), and the median days from discharge to readmission were 32.50 days (interquartile range = 14.00, 75.00). Reasons for readmission were: unanticipated new medical issue (n = 33, 44.59%), uncontrolled symptoms (n = 25, 33.78%), misunderstanding of hospice status (n = 12, 16.22%), and caregiver distress (n = 4, 5.41%). The following characteristics were associated with readmission: female versus male (odds ratio [OR] = 1.96; 95% confidence interval [CI]: 1.16–3.32), non-white versus white (OR = 2.40; 95% CI: 1.36–4.24), and hospice diagnosis of cardiac disease versus all other diagnoses (OR = 4.40; 95% CI: 2.06–9.37).
Conclusions: Compared with prior studies, our findings showed a lower incidence of readmission, 10.50%, from home hospice. In addition, those who are female, non-white, or have a hospice diagnosis of cardiac disease are more likely to be readmitted.
Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U.S. health care payment reforms create financial opportunities to offer HBPC. Consequently, more HBPC programs are emerging, heightening the need to evaluate their effectiveness.
Methods: This randomized, controlled trial is comparing the effectiveness of an evidence-based model of HBPC and enhanced usual primary care for participants who receive primary care from medical groups and clinics organized under an accountable care organization or Medicare Advantage plan. Palliative care services are reimbursed by our partnering health plan provider. The five-year trial will enroll 1155 seriously ill participants (and ~884 of their caregivers) with heart failure, chronic obstructive pulmonary disease, or advanced cancer. We are collecting data via telephone surveys with participants at baseline and one and two months postenrollment and with caregivers at baseline, one and two months postenrollments, and following the death of a loved one. We are collecting participant-reported outcome measures of pain, symptoms, anxiety, depression, participant-provider communication, and hope. Caregiver outcome measures include caregiver burden, communication with providers, anxiety, and depression. Additional outcomes are participant survival time and participants' emergency department visits and hospitalizations.
Study Implementation: Challenges and Contributions: Our research team has encountered several significant challenges in early study implementation. These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country.
Introduction: As health care systems strive to meet the growing needs of seriously ill patients with high symptom burden and functional limitations, they need evidence about how best to deliver home-based palliative care (HBPC). We compare a standard HBPC model that includes routine home visits by nurses and prescribing clinicians with a tech-supported model that aims to promote timely interprofessional team coordination using video consultation with the prescribing clinician while the nurse is in the patient's home. We hypothesize that tech-supported HBPC will be no worse compared with standard HBPC.
ethods: This study is a pragmatic, cluster randomized noninferiority trial conducted across 14 Kaiser Permanente sites in Southern California and the Pacific Northwest. Registered nurses (n = 102) were randomized to the two models so that approximately half of the participating patient–caregiver dyads will be in each study arm. Adult English or Spanish-speaking patients (estimate 10,000) with any serious illness and a survival prognosis of 1–2 years and their caregivers (estimate 4800) are being recruited to the HomePal study over [about] 2.5 years. The primary patient outcomes are symptom improvement at one month and days spent at home. The primary caregiver outcome is perception of preparedness for caregiving.
Study Implementation—Challenges and Contributions: During implementation we had to balance the rigors of conducting a clinical trial with pragmatic realities to ensure responsiveness to culture, structures, workforce, workflows of existing programs across multiple sites, and emerging policy and regulatory changes. We built close partnerships with stakeholders across multiple representative groups to define the comparators, prioritize and refine measures and study conduct, and optimize rigor in our analytical approaches. We have also incorporated extensive fidelity monitoring, mixed-method implementation evaluations, and early planning for dissemination to anticipate and address challenges longitudinally. Trial Registration: ClinicalTrials.gov: NCT#03694431.
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
BACKGROUND: The holistic and multidisciplinary approach of in-home palliative care (IHPC) is known to offer high-quality and cost-effective care for patients at the end of life. However, the financial benefits of upstream IHPC programs to hospitals, patients, and payers have not been fully characterized for patients with comorbid chronic conditions.
AIM: To characterize the financial benefits that upstream IHPC offers to patients with multiple chronic conditions.
METHODS: A structured retrospective patient record review was conducted on the number of emergency department (ED) visits, number of inpatient hospitalizations, hospital length of stay (LOS), and payments made to the hospital for all patients (N = 71) enrolled in an IHPC program between January 1, 2016, and June 30, 2016. Discharge history from each patient's medical record was also assessed. Comparisons were drawn between patients' LOS on IHPC and an equivalent time period prior to enrollment in IHPC.
RESULTS: After patients enrolled in IHPC, average ED and inpatient utilization declined significantly by 41% (P = .01) and 71% (P < .001), respectively. The payers for health-care services realized a significant decline of US$2,201 (P < .001) in hospital payments per patient per month. Inpatient LOS was also significantly lower than expected once patients enrolled in the program (P = .01).
CONCLUSIONS: As the need for chronic disease management continues to grow, managers of health systems, managed care organizations, and home health agencies should be cognizant of the financial value that IHPC has to offer.
BACKGROUND: Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland.
METHODS: The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public.
RESULTS: Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content.
CONCLUSIONS: We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care.
AIM: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual.
DESIGN: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves.
SETTING/PARTICIPANTS: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study.
RESULTS: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time.
CONCLUSION: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers' support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.
Objective: Home-based palliative care has been suggested to be a beneficial model of care. Whether it is a desirable option of the family and patients is arguable. This study, therefore, aimed to explore the experience of the family the palliative cancer patients in their decision-making process of taking care of the patients at home.
Methods: This study was a qualitative study using descriptive phenomenology approach. Data were obtained through in-depth interviews with 10 family member of the palliative cancer patients.
Results: three themes emerged in this study: (1) family's limited knowledge and skill to take care of the palliative cancer patients at home, (2) family wish the patients to stay being treated in the hospitals, (3) family depends on the hospital for palliative cancer patients.
Conclusions: Nurses should evaluate family preference, readiness, and capabilities in taking care of palliative cancer patients at home. Nurses should collaborate with the health care providers in assisting the family in their decision making to keep the palliative care patients at the hospital or take them home.
BACKGROUND: The PaTz-method (acronym for Palliatieve Thuiszorg, palliative care at home) is perceived to improve coordination, continuity and communication in palliative care in the Netherlands. Although important for further implementation, research showing a clear effect of PaTz on patient-related outcomes is scarce. This study aimed to examine perceived barriers and added value of PaTz and its association with improved care outcomes.
METHODS: Ninety-eight Dutch general practitioners and 229 Dutch district nurses filled out an online questionnaire with structured questions on added value and barrier perception of PaTz-participation, and palliative care provided to their most recently deceased patient, distributed online by Dutch medical and nurses' associations. Data from PaTz-participants and non-participants was compared using Chi-square tests, independent t-tests and logistic regression analyses.
RESULTS: While both PaTz-participants and non-participants perceived PaTz to be beneficial for knowledge collaboration, coordination and continuity of care, time (or lack thereof) is considered the most important barrier for participation. PaTz-participation is associated with discussing five or more end-of-life topics with patients (OR = 3.16) and with another healthcare provider (OR = 2.55). PaTz-participation is also associated with discussing palliative sedation (OR = 3.85) and euthanasia (OR = 2.97) with another healthcare provider. Significant associations with other care outcomes were not found.
CONCLUSIONS: General practitioners and district nurses feel that participating in a PaTz-group has benefits, but perceive various barriers for participation. While participating in a PaTz-group is associated with improved communication between healthcare providers and with patients, the effect on patient outcomes remains unclear. To stimulate further implementation, future research should focus on the effect of PaTz on tangible care characteristics and how to facilitate participation and remove barriers.