Economic evaluation of a person-centred care intervention in head and neck oncology: results from a randomized controlled trial.

PURPOSE: Head and neck cancer and its treatment deteriorate quality of life, but symptoms improve with person-centred care. We examined the cost-effectiveness of a person-centred care intervention versus standard medical care. METHODS: In this randomized clinical trial of a person-centred intervention, patients were planned for outpatient oncology treatment in a Swedish university hospital between 2012 and 2014 and were followed during 1 year. Annual healthcare costs were identified from medical records and administrative register data. Productivity costs were calculated from reported sick leave. Health-related quality of life was collected using the EuroQol Group's five-dimension health state questionnaire. RESULTS: Characteristics were similar between 53 patients in the intervention group and 39 control patients. The average total cost was Euro (EUR) 55,544 (95% confidence interval: EUR 48,474-62,614) in the intervention group and EUR 57,443 (EUR 48,607-66,279) among controls, with similar health-related quality of life. CONCLUSIONS: This person-centred intervention did not result in increased costs and dominated the standard medical care. TRIAL REGISTRATION: ClinicalTrials.gov (registration number: NCT02982746).

Impact of a person-centered intervention for patients with head and neck cancer: a qualitative exploration.

BACKGROUND: People affected by head and neck cancer (HNC) experience a variety of multifaceted health-related problems during the treatment process, based on both the disease and side effects, several years after the treatment is complete. This study investigated a person-centred intervention using transition theory as a framework. AIM: Thus, the aim of the present study was to explore patients' experience of the transition and person centred care from diagnosis to the end of the treatment period. METHODS: Interviews were conducted with 12 persons included in the person-centred intervention group. The patients were recruited from a randomised controlled study. We used a directed deductive content analysis as an analysis method. RESULTS: There was a distinct transition between being a healthy person to being diagnosed with a serious disease. The majority of the participants felt that the diagnosis had put their lives in the balance; they felt both healthy and sick at the same time, and all participants described that their symptoms and side effects were the worst possible and totally unexpected. Of great importance was the health-care plan, comprising self-management goals which were formed in partnership between the patient and the nurse. The participants experienced that their interaction and engagement with lay persons and healthcare professionals supported a gradual acceptance of the situation and a sense of relief with a kind of awareness of the disease. CONCLUSION: The intervention played a significant role in promoting a healthy transition. Person-centredness and transition theory can help healthcare professionals to be more confident and resourceful in supporting people affected by HNC.

The unannounced patient in the corridor: trust, friction and person-centered care.

In this study, a Swedish cancer clinic was studied where three to four unscheduled patients sought support from the hospital on a daily basis for pain and nutrition problems. The clinic was neither staffed nor had a budget to handle such return visits. In order to offer the patients a better service and decrease the workload of the staff in addition to their everyday activities, a multidisciplinary team was established to address the unscheduled return visits. The team was supposed to involve the patient, build trust, decrease the friction, and contribute to a successful rehabilitation process. Data were collected from the patients and the staff. Patients who encountered the team (intervention) and patients who encountered the regular ad hoc type of organization (control) answered a questionnaire measuring trust and friction. Nurses in the control group spent 35% of their full-time employment, and the intervention group staffed with nurses spent 30% of their full-time employment in addressing the needs of these return patients. The patients perceived that trust between them and the staff was high. In summary, it was measured as being 4.48 [standard deviation (SD) = 0.82] in the intervention group and 4.41 (SD = 0.79) in the control group using the 5-point Likert scale. The data indicate that using a multidisciplinary team is a promising way to handle the problems of unannounced visits from patients. Having a team made it cost effective for the clinic and provided a better service than the traditional ad hoc organization. Copyright © 2015 John Wiley & Sons, Ltd.

Can a person-centred-care intervention improve health-related quality of life in patients with head and neck cancer? A randomized, controlled study.

BACKGROUND: The incidence of head and neck cancer is increasing slightly. Head and neck cancer but also it's necessary and often successful treatment may affect general domains of health-related quality of life and provoke a variety of adverse symptoms and side effects, both during and after treatment. The objective of this study was to compare a person-centred care intervention in terms of health-related quality of life, disease-specific symptoms or problems, with traditional care as a control group for patients with head and neck cancer. METHODS: In this randomized controlled trial, person-centred-care intervention and traditional care (control) groups comprised 54 and 42 patients, respectively. Outcome measures used were: the EORTC QLQ-C30 and the EORTC QLQ-C35. Both groups answered the questionnaires at baseline and after 4, 10, 18 and 52 weeks from start of treatment. The questionnaires' scores were compared between groups by using independent samples test and non-parametric test for continuous variables. For categorical data, Fisher's exact test was used. Longitudinal data were analysed using generalized linear models for normally distributed repeated measures data. RESULTS: At baseline, the intervention and control groups were comparable in terms of medical and sociodemographic variables, clinical characteristics, health-related quality of life and disease-specific symptoms or problems. At all the follow-up points, even during the worst period for the patients, the person-centred-care group consistently reported better scores than the control group. The differences were numerically but not always statistically significant. When testing longitudinal data, statistically significant results were found for head and neck cancer-specific problems, swallowing (p = 0.014), social eating (p = 0.048) and feeling ill (p = 0.021). CONCLUSIONS: The results from this study suggest that adopting the person-centred-care concept practiced here could be a way to improve function and wellbeing in patients with head and neck cancer. TRIAL REGISTRATION: The study was retrospectively registered in 2016-12-05 in Clinical Trials gov. "Can a Person-centred-care Intervention Improve Health-related Quality of Life in Patients With Head and Neck Cancer" registration number: NCT02982746.

Exploring the Person-Centeredness of an Innovative E-Supportive System Aimed at Person-Centered Care: Prototype Evaluation of the Care Expert.

Integrated in a multiphase development project, the Care Expert is a prototype of a novel e-supportive system aiming to mediate person-centered care in the context of outpatient oncology. At this early stage of development, the current study was conducted aiming at exploring the person-centeredness concept underlying the Care Expert version 1.0 and its usability for patients receiving outpatient chemotherapy for breast cancer. Within a user-centered design, we followed a mixed-methods approach entailing subjective assessment and diagnostic evaluation of the prototype. Four women undergoing outpatient chemotherapy participated in individual sessions and rated highly the system's usability. Their accounts led to identifying three supportive functions: continuous communication, reinforcement of self-driven agency, and cooperative agency with a sense of being looked after. We discuss the results in relation to theoretical fields that might guide further the development of the supportive system and usability recommendations. Care Expert has the potential to mediate person-centered care in outpatient oncology. Nevertheless, additional cycles of iterative development with the software team and of participatory design focusing on oncology nurses' perspectives are required before departing to the feasibility phase in intervention research.

Person-centred web-based support--development through a Swedish multi-case study.

BACKGROUND: Departing from the widespread use of the internet in modern society and the emerging use of web applications in healthcare this project captures persons' needs and expectations in order to develop highly usable web recourses. The purpose of this paper is to outline a multi-case research project focused on the development and evaluation of person-centred web-based support for people with long-term illness. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care. The project aims to contribute to the ongoing development of web-based supports in health care and to the emerging field of person-centred care. METHODS/DESIGN: The research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and urogenital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementation, and analysis. This, we argue, will lead to a synthesis of results on a meta-level not yet described. DISCUSSION: To allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people's experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Person-centred web-based support is a new area and few studies focus on how web-based interventions can contribute to the development of person-centred care. In summary, the main intention of the project outlined here is to contribute with both a synthesis of results on meta-level from four cases and a substantial contribution to the field person-centred care.

A transition out of the darkness: Patients' experience of the recovery phase after treatment for head and neck cancer.

PURPOSE: To explore the recovery experience of patients who completed medical treatment for head and neck cancer (HNC). METHOD: The study conducted interviews with a strategic sample of 12 patients at an oncology clinic. Interview data were analyzed by qualitative content analysis with a deductive approach based on transition theory. RESULTS: The transition theory coding frame for patients' descriptions of their recovery process produced four categories: properties, personal conditions, process indicators, and outcome indicators. Personal conditions, such as cultural beliefs and attitudes, impact the outcome of recovery, and necessitate interaction throughout the care chain using the person-centered care approach to help survivors master their changed living conditions during recovery after HNC. The transition was described as a journey out of a dark period characterized by a struggle with the side effects of chemotherapy and radiation treatment. CONCLUSIONS: This study highlighted the use of person-centered care to facilitate transition in the recovery phase, supported by an intra-professional team that collaborates during the care chain (primary care to hospital care). Patient education and self-care are tools that improve the transition from illness to everyday life.

A health economic evaluation of follow-up after breast cancer surgery: results of an rct study.

INTRODUCTION: Breast cancer follow-up programmes consume large resources and despite the indications that several alternative approaches could be used effectively, there is no coherent discussion about costs and/or cost-effectiveness of follow-up programmes. PATIENT AND METHODS: In a prospective trial there were 264 breast cancer patients, stage I and II, randomised to two different follow-up programmes- PG (physician group) and NG (nurse group). The trial period was 5 years. The women in the two intervention groups did not differ in anxiety and depression, their satisfaction with care, their experienced accessibility to the medical centre or their medical outcome as measured by recurrence or death. The analyses were done from different lists representing costs at three hospitals in Sweden according to the principles of a cost minimization study. RESULTS: The cost per person year of follow-up differed between the groups, with 630 euro per person year in PG compared to 495 euro per person year in NG. Thus, specialist nurse intervention with check-ups on demand was 20% less expensive than routine follow-up visits to the physician. The main difference in cost between the groups was explained by the numbers of visits to the physician in the respective study arms. There were 21% more primary contacts in PG than NG. DISCUSSION: The difference in cost per year and patient by study arm is modest, but transforms to nearly 900 euro per patient and 5-year period, offering a substantial opportunity for reallocating resources since breast cancer is the most prevalent tumour worldwide.

The usefulness of a multidisciplinary educational programme after breast cancer surgery: a prospective and comparative study.

The aim of the study was to compare and evaluate a multidisciplinary educational programme with traditional follow-up visits to a physician after breast cancer surgery in terms of well-being, aspects of self-care and coping ability 1 year after diagnosis. A reduction in the intensity of follow-up after breast cancer surgery is recommended. New follow-up models are being debated and could be of interest. The study design was non-randomised and comparative. Ninety-six consecutively selected women with newly diagnosed breast cancer, classified as stage I or stage II, participated in either a multidisciplinary educational programme (n=50), or traditional follow-up by a physician (n=46). Three questionnaires were used: Functional Assessment of Cancer Therapy-General (FACT-G), a study specific questionnaire regarding self-care aspects (SCA) and Sense of Coherence (SOC). With the exception of physical well-being at baseline there was no significant difference between the groups. The women in the multidisciplinary educational programme increased their physical and functional well-being (P<0.01). The women in traditional follow-up by a physician increased their functional well-being while social/family well-being (P<0.01) decreased over time. There was a statistically significant difference in SOC (P<0.001) in the traditional follow-up by a physician between baseline (mean=74.4, SD=12.4) and the 1-year follow up (mean=67.7, SD=11.4). Thus, women in the traditional follow-up by a physician scored lower in the area of SOC 1 year after diagnosis. A multidisciplinary educational programme may be an alternative to traditional follow-up by a physician after breast cancer surgery, but more research is needed about the financial benefits and effectiveness of such a programme.

Postoperative wound infections after a proctectomy--Patient experiences.

Poor perineal wound healing and infections after proctectomy surgery cause a significant proportion of physical and psychological morbidities, such as pain, leakage, and abscesses. In the long run, some of these symptoms will lead to extended periods of hospitalization. These kinds of postoperative complications are also associated with delays in possible chemotherapy treatment. The aim of this study was to describe patient experiences of perineal wound infections following proctectomy due to rectal cancer, and the importance of the communication with and the self-care support from the nurse for these patients. Five women and five men (61-87 years, median age 71 years) were included and interviewed. A qualitative content analysis of the interviews was carried out and the following main categories emerged: "Managing postoperative complications," "Being independent," "Feeling safe," and "Accepting the situation." A perineal wound infection after a proctectomy is devastating for the individual patient. The limitations and changes to the patients' lives turn into new daily routines, which force them to find new ways to live and to accept the situation. For many of them, the infections remained for several months and, sometimes, for years. The ability to lead an independent life is drastically reduced, but through continuity in care it is possible to create a feeling of safety. Information, communication, and self-care support are all important and valuable factors for recovery. Specialized care containing an action plan is therefore needed in clinical practice to reduce the number of perineal wound infections postoperatively and should be initiated when the patient is discharged from the ward and continue until recovery.

Purposeful Agency in Support Seeking During Cancer Treatment From a Person-Centered Perspective.

People diagnosed with early-stage breast cancer (ESBC) manifest high supportive needs. eHealth supportive programs successfully satisfy those needs, but the process of generating supportive outcomes is less understood. We conducted this study to explore patients' efforts to satisfy their supportive needs throughout the treatment course, not limited to but particularly considering their use of the Internet. Guided by interpretive description, 19 women undergoing treatment for ESBC participated in two phases of focus group meetings. Our results disclose women as self-driven resourceful agents, a perspective that underlay the process of reaching out as women appraised their need for support and intentionally engaged their supportive resources. Our findings convey a need to shift the paradigm of professionals' provision of support in scheduled appointments toward achieving a continuous reciprocal care partnership. This is especially significant for the development of eHealth supportive programs, which assist in the enhancement of the health care accessibility.

The Recovery Process When Participating in Cancer Support and Rehabilitation Programs in Sweden.

The aim was to illuminate the meaning of participating in support and rehabilitation programs described by people diagnosed with cancer. Nineteen persons were interviewed in focus groups and face-to-face. Data were analyzed with a qualitative phenomenological hermeneutical method for researching lived experiences. Interpretation proceeded through three phases: naïve reading, structural analysis, and comprehensive understanding. Three themes were disclosed: receiving support for recovery when being most vulnerable, recapturing capabilities through supportive activities, and searching to find stability and well-being in a changed life situation. Participating in the programs was an existential transition from living in an unpredictable situation that was turned into something meaningful. Recovery did not mean the return to a state of normality; rather, it meant a continuing recovery from cancer treatments and symptoms involving recapturing capabilities and searching for a balance in a forever changed life. This study provides new insights about the experiences of participating in cancer support and rehabilitation programs.

Role of Theories in the Design of Web-Based Person-Centered Support: A Critical Analysis.

Objective. The aim of this study was to provide a critical understanding of the role of theories and their compatibility with a person-centered approach in the design and evaluation of web-based support for the management of chronic illness. Methods. Exploration of web-based support research projects focusing on four cases: (1) preschool children aged 4-6 with bladder dysfunction and urogenital malformation; (2) young adults aged 16-25 living with mental illness; (3) women with type 1 diabetes who are pregnant or in early motherhood; and (4) women who have undergone surgery for breast cancer. Data comprised interviews with research leaders and documented plans. Analysis was performed by means of a cross-case methodology. Results. The used theories concerned design, learning, health and well-being, or transition. All web support products had been developed using a participatory design (PD). Fundamental to the technology design and evaluation of outcomes were theories focusing on learning and on health and well-being. All theories were compatible with a person-centered approach. However, a notable exception was the relatively collective character of PD and Communities of Practice. Conclusion. Our results illustrate multifaceted ways for theories to be used in the design and evaluation of web-based support.

Characterisation of cancer support and rehabilitation programmes: a Swedish multiple case study.

Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.

An integrative review of supportive e-health programs in cancer care.

PURPOSE: This integrative review aims to gather more knowledge of the design of supportive e-health interventions for patients diagnosed with cancer and subsequently analyze and synthesize that knowledge in a potential explanatory model for those interventions. METHODS: PubMed, CINAHL and PsycINFO were searched for abstracts dating from 2000 through to June 2012. Eligible articles concerned education or support for adult cancer patients, and were provided either on the Internet or using CD-ROM or DVD. RESULTS: Twenty-eight quantitative studies constituted the final sample, revealing that supportive e-health programs in the field of cancer are being used and are helpful to individuals despite their age, gender, literacy level and disease-stage. Each e-health program usually constitutes a single service with a variety of multimedia features, which leads to different designs yet with common outcomes. Some of these outcomes are theoretically explained, although a structure that links all aspects of the intervention is rarely found. Moreover, different designs have also been adopted for testing the interventions' effectiveness. CONCLUSION: E-health interventions that allow supportive needs to be satisfied are leading to positive effects for individuals with different preferences and priorities. Even though several communalities could be found across interventions, methodological aspects of design, implementation and evaluation still vary, leading to some inconsistency. Models and applied theories are needed to clarify such issues, thus enhancing the credibility and applicability of supportive e-health programs across target populations.

Evaluation of a web-based educational program for women diagnosed with breast cancer: why is the intervention effect absent?

To provide accurate and tailored information to women diagnosed with breast cancer a web-based educational program was developed and tested in a randomized controlled trial for impact on health self-efficacy, healthcare participation, and anxiety and depression levels. Multilevel modelling with an intention-to-treat analysis revealed no treatment effect on the above-mentioned outcomes. Reasons for the non-identified effect are discussed and raise methodological questions concerning e-health supportive interventions for further research.

Patients' experience of important factors in the healthcare environment in oncology care.

BACKGROUND AND OBJECTIVE: The aim of this study was to describe what factors of the healthcare environment are perceived as being important to patients in oncology care. DESIGN: A qualitative design was adopted using focus group interviews. SETTING AND PARTICIPANTS: The sample was 11 patients with different cancer diagnoses in an oncology ward at a university hospital in west Sweden. RESULTS: Analysis of the patients' perceptions of the environment indicated a complex entity comprising several aspects. These came together in a structure consisting of three main categories: safety, partnership with the staff, and physical space. The care environment is perceived as a complex entity, made up of several physical and psychosocial aspects, where the physical factors are subordinated by the psychosocial factors. It is clearly demonstrated that the patients' primary desire was a psychosocial environment where they were seen as a unique person; the patients wanted opportunities for good encounters with staff, fellow patients, and family members, supported by a good physical environment; and the patients valued highly a place to withdraw and rest. CONCLUSIONS: This study presents those attributes that are valued by cancer patients as crucial and important for the support of their well-being and functioning. The results show that physical aspects were subordinate to psychosocial factors, which emerged strongly as being the most important in a caring environment.

Breast cancer patients' satisfaction with a spontaneous system of check-up visits to a specialist nurse.

AIM: To describe breast cancer patients' satisfaction with a spontaneous system of check-up visits to a specialist nurse. BACKGROUND: There is little evidence that routine follow-up visits after breast cancer surgery influence survival or patient satisfaction. Consequently, there is a need to evaluate alternative follow-up programmes. SAMPLE: A strategic sample of 19 breast cancer patients, who were not involved in a routine follow-up system but who had the possibility of contacting a specialist nurse when necessary, were interviewed. METHOD: A qualitative descriptive design inspired by the method of phenomenographic analysis was used. FINDINGS: Five description categories and 606 statements showing similarities and differences in conceptions were obtained. The patients satisfaction with the knowledgeable and professional skills of the nurses was high. Confirmation and trust were important and necessary in order for the women with breast cancer to feel secure. Patients had a need for information and self-care education. Accessibility and early assessment by professional personnel or an oncology nurse were essential in a system without routine follow-ups. DISCUSSION: This study identifies key issues in a specialist nurse-led check-up system. The findings can be used for developing an education programme for women who have undergone breast cancer surgery. Additionally, the findings emphasize the need to introduce more flexible solutions to the follow-up programmes, one alternative being specialist nurse-led check-ups.