Experiences Of Follow-up Care Research Articles

Self-reported follow-up care needs can be met in both facility and self-managed abortion: Evidence from low- and middle-income countries

ObjectivesTo understand in-facility follow-up care-seeking behavior among both people who self-managed medication abortions and those who obtained facility-managed care in low-and-middle-income countries. We explore factors that contribute to meeting individual self-reported follow-up care needs, core to person-centered care. Study designWe conducted a qualitative, codebook thematic analysis of 67 in-depth interviews conducted with people who self-managed medication abortions or obtained facility-managed medication abortion care. We first classified individuals as having their follow-up care needs met (not seeking care when the participant felt confident that additional care was not warranted or desired or receiving care if it was desired) or not. Our a priori analytic domains came from the Anderson model of health services utilization - predisposing, enabling, or need factors (perceived and evaluated need for health services) that contributed to having follow-up care needs met or not. We also describe emergent themes within each domain. ResultsMost participants (n=59, 88%) had their follow-up care needs met; half (n=33, 49%) sought follow-up care in a facility. Prior birth or abortion experiences emerged as predisposing factors for having follow-up care needs met. Having accompaniment support (from activists or hotlines who provide abortion guidance outside of clinical settings), knowing what to expect, and information sources were key enabling factors for having follow-up care needs met. Need factors included flexible follow-up care guidelines. Those who did not have their follow-up care needs met described predisposing negative health system experiences; enabling factors including health system challenges, stigma from providers, and legal risk; and need factors of required follow-up care guidelines. ConclusionsMedication abortion follow-up care experiences are diverse, and individual needs can be met both in and outside of health facilities. Understanding prior experiences, enabling accompaniment support, and considering flexible follow-up care guidelines can support meeting individual follow-up care needs, which is essential to person-centered abortion care. ImplicationsFollow-up care needs, essential to ensuring access to high-quality abortion services, can be met in both self-managed and in-facility medication abortion models. Policies that require follow-up care when it is not needed or desired by the person can reinforce ideas that self-managed abortion is not safe or effective, despite existing evidence.

Improving mesothelioma follow-up care in the UK: a qualitative study to build a multidisciplinary pyramid of care approach

ObjectivesThe findings reported in this manuscript are part of a wider study that aimed to explore mesothelioma patients’ experiences of follow-up care. The aim of this phase of the study...

Understanding women's perspectives and information needs about shared follow-up care for early breast cancer: a qualitative study.

Shared breast cancer follow-up care involving a breast cancer specialist and a general practitioner (GP) has been demonstrated to be effective, yet barriers to participation in this model by women remain. This study explores the responses of women who recently finished active treatment for early breast cancer (EBC) to a proposed model of shared follow-up care to understand the type of information needed to support participation. Qualitative study based on focus groups with women with EBC in the early stage of follow-up care from across metropolitan, regional and rural settings in Australia. Discussions were transcribed and thematic analysis is undertaken. Four focus groups were conducted, involving 31 women aged between 32 and 78 years. The discussion focused on two topics. In the first topic 'Current experiences of follow-up care', two themes emerged: (i) follow-up as a continuation of active treatment; (ii) GPs involvement in care during active treatment influence attitudes to shared follow-up care. In the second topic area 'Perceptions of shared follow-up care' four themes emerged: (i) a need for evidence regarding model effectiveness; (ii) choice; (iii) concerns regarding capacity and capability of GPs to deliver care and (iv) the need for clear communication between GPs, specialists and women. Women need information regarding the evidence for the effectiveness of shared follow-up care to assure them it does not pose a risk to their health outcomes. Clear descriptions of GP and specialist roles and the opportunity to jointly decide participation is essential for the model to be adopted.

Gaps in patient-centered follow-up cancer care: a cross sectional study

Objective There are published guidelines on the care that should be provided to cancer patients upon finishing treatment (i.e. follow-up care). Gaps in care may arise where patients’ reported experiences of care do not align with guideline recommendations. The aim of this study was to explore whether oncology patients report gaps in patient-centered follow-up care. Methods This study was a cross-sectional survey of adult cancer patients receiving follow-up care within four outpatient oncology clinics. Patients were approached in clinic waiting rooms and asked to complete an electronic survey. The survey examined patients’ self-report of receiving six aspects of follow-up care. Results A total of 239 participants completed the survey (study consent rate = 83%). Only 49% of participants received all six items of care. Patients reported high rates of being told who to contact if they have any questions or concerns (95%); who to contact if signs or symptoms occur (91%); and what to expect in their follow-up care (90%). A lower proportion of patients indicated they were informed about the role of their GP after treatment has finished (79%); what symptoms or signs might suggest the cancer had returned (74%); or were given a written care plan (71%). Conclusions: The study highlights that there is a gap between some aspects of optimal patient-centered care, and the actual care received by patients. Health care providers and researchers should consider how to improve follow-up care experiences to ensure best practice cancer care delivery during this important stage in cancer survivorship.

Living with long-term consequences: Experience of follow-up care and support needs among Asian long-term colorectal cancer survivors.

This study aimed to provide an in-depth exploration of follow-up care experiences and supportive care needs in long-term colorectal cancer (CRC) survivors within multiethnic Asian communities. Semi-structured in-depth interviews were conducted on a purposive sample of 30 long-term CRC survivors who had completed all treatment without recurrence ranging 2 to 17 years in Singapore. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted following grounded theory approach. Four themes represented the experience of the Asian long-term CRC survivors: (a) living with long-term consequences, (b) dealing with unceasing adaptation demands, (c) navigating a healthcare journey with limited direction, (d) regaining mastery through adversity. CRC and its treatment had profound physical impacts on some long-term survivors and these effected their psychological well-being. A sense of abandonment and vulnerability following the cessation of a 5-year follow-up care was repeatedly expressed. Participants defined recovery from CRC as not merely surviving but also having high physical function and full independence. They often sought less conventional remedies and medicine based on cultural beliefs rather than current evidence. Participants noted pervasive social stigma associated with CRC that impeded their inclusion in the workforce. Asian long-term CRC survivors experienced multiple challenges and needs relating to the care experience, information provision and workforce stigmatization, and several of which were unique to the Asian context. Future work will need to consider the implementation of culturally tailored cancer survivorship care plans that incorporate the specific needs of Asian CRC survivors.

Patients’ experiences of life after bariatric surgery and follow-up care: a qualitative study

ObjectivesBariatric surgery is the most clinically effective treatment for people with severe and complex obesity, however, the psychosocial outcomes are less clear. Follow-up care after bariatric surgery is known to...

163 - Mesothelioma patients’ experiences of follow-up care across three NHS trusts

163 - Mesothelioma patients’ experiences of follow-up care across three NHS trusts

TIA and minor stroke: a qualitative study of long-term impact and experiences of follow-up care

BackgroundTransient ischaemic attack (TIA) and minor stroke are often considered transient events; however, many patients experience residual problems and reduced quality of life. Current follow-up healthcare focuses on stroke prevention and care for other long-term problems is not routinely provided.We aimed to explore patient and healthcare provider (HCP) experiences of residual problems post-TIA/minor stroke, the impact of TIA/minor stroke on patients’ lives, and current follow-up care and sources of support.MethodsThis qualitative study recruited participants from three TIA clinics, seven general practices and one community care trust in the West Midlands, England. Semi-structured interviews were conducted with 12 TIA/minor stroke patients and 24 HCPs from primary, secondary and community care. Data was analysed using framework analysis.ResultsA diverse range of residual problems were reported post-TIA/minor stroke, including psychological, cognitive and physical impairments. Consultants and general practitioners generally lacked awareness of these long-term problems; however, there was better recognition among nurses and allied HCPs. Residual problems significantly affected patients’ lives, including return to work, social activities, and relationships with family and friends. Follow-up care was variable and medically focused. While HCPs prioritised medical investigations and stroke prevention medication, patients emphasised the importance of understanding their diagnosis, individualised support regarding stroke risk, and addressing residual problems.ConclusionHCPs could better communicate information about TIA/minor stroke diagnosis and secondary stroke prevention using lay language, and improve their identification of and response to important residual impairments affecting patients.

A Formative Study of Colon Cancer Surveillance Care: Implications for Survivor-Centered Interventions.

Colon cancer is one of the most commonly diagnosed cancers in the United States, and an increasing number of survivors has underscored the need for improved colon cancer surveillance care quality. Post-treatment surveillance includes follow-up care visits and tests as well as psychosocial support and lifestyle counseling. This formative study explored the individual, interpersonal, and organizational-level factors related to adherence to surveillance care guidelines to identify modifiable factors for potential educational intervention strategies. A convenience sample of 22 survivors (12 women and 10 men) from two cancer centers were recruited to participate in focus groups or key informant telephone interviews to explore their experiences with care after completing treatment and complete a brief survey. Content analysis was used to identify themes. Results confirmed that survivors navigated a complex surveillance care schedule and described a strong trust in their health care providers that guided their follow-up care experiences. Participants defined the terms "survivorship" and "follow-up" in a variety of different ways. Individual-level themes critical to survivors' experiences included having a positive attitude, relying on one's faith, and coping with fears. Interpersonal-level themes centered around interactions and communication with family and health care providers in follow-up care. While organizational-level factors were highlighted infrequently, participants rated office reminder systems and communication among their multiple providers as valuable. Educational interventions capitalizing on survivors' connections with their physicians and focusing on preparing survivors for what to expect in the next phase of their cancer experience, could be beneficial at the end of treatment to activate survivors for the transition to the post-treatment period.

Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers.

Post-treatment follow-up represents a crucial aspect of quality cancer care; however, data are lacking regarding follow-up care experiences, perception of provider involvement in care, and perceived quality of care from diverse samples of long-term survivors diagnosed as adults. Questionnaires were mailed in 2005 to 2006 to breast, prostate, colorectal, endometrial, and ovarian cancer survivors (4 to 14 years after diagnosis), sampled from California SEER cancer registries. Most survivors (n = 1,490) reported recent follow-up care (68.7%), generally from oncology specialists only (47.4%) or shared between oncology and primary care providers (PCPs; 27.6%). Most survivors reported follow-up care advice (79.9%); fewer reported late-effects advice or receipt of a treatment summary (41.7% and 19.9%, respectively). Survivors who identified a PCP as their main follow-up care physician were as likely as those identifying an oncology specialist to rate their care as high quality (odds ratio [OR], 2.56; 95% CI, 0.98 to 6.74); however, survivors who could not identify a main follow-up care provider were less likely to report high-quality care (OR, 0.20; 95% CI, 0.08 to 0.50). Compared with follow-up care by an oncology specialist only, care by a PCP only was associated with a lower quality-of-care rating (OR, 0.34; 95% CI, 0.13 to 0.91), but there was no significant difference in quality rating by survivors when care was shared by an oncology specialist and PCP compared with an oncology specialist only. Long-term survivors commonly report follow-up care years after their diagnosis; however, many patients' follow-up lacks important components. Care is more likely to be rated as high quality when one main provider is identified and an oncology specialist is involved.

Why do some patients prefer to leave decisions up to the doctor: lack of self-efficacy or a matter of trust?

Decision-making preferences among cancer survivors during their follow-up care remains understudied and limited research examines factors that underlie these preferences. The purpose of this study was to assess cancer patients' decision-making preferences during follow-up care, the role of trust and self-efficacy, and the effect of preferences on health outcomes. Six hundred twenty-three bladder, leukemia, and colorectal cancer survivors were recruited to the Assessment of Patient Experiences of Cancer Care study between April 2003 and November 2004. Respondents were asked about their follow-up care experiences, including decision-making preferences, trust in physicians, self-efficacy, health-related quality of life (HRQOL), and health appraisal. Unadjusted mean scores of trust and self-efficacy measures by decision preference group were examined. Multinomial logistic and linear regressions were conducted to examine predictors of decision-making preferences and the impact of decision-making preferences on HRQOL and health appraisal. While the majority of patients preferred shared decision-making (61.0%), 16.1% preferred to control their decisions and 22.1% preferred physician control over decisions. Compared to the other groups, patients preferring physician control had greater trust in their physician (p < 0.001), similar self-efficacy for engaging in the decision-making process, and lower self-efficacy for taking responsibility over decisions (p < 0.001). There were no notable differences between decision-making groups on outcome measures. Patients who prefer physicians to control decisions are as confident about participating in the decision-making process and experience similar health outcomes as those preferring greater decisional control. Physicians need to tailor their communication behavior to encourage participation and trust among all patients. Findings from this study provide unique insights into the decision-making preferences of cancer patients during receipt of follow-up care, which remains an understudied phase of cancer care delivery. Results underscore the need for approaches to decision-making and patient engagement to become more nuanced and to encourage patients to participate in decision-making in ways they are most comfortable. Furthermore, physicians and health care professionals should foster environments that promote trust and clear communication regardless of patient decision-making styles.

Characteristcs associated with complementary and alternative medicine use among racially and ethnically diverse long-term cancer survivors.

e20532 Background: To identify the prevalence and predisposing, enabling and need for care characteristics of long-term adult cancer survivors who use complementary and alternative medicine (CAM) modalities. Methods: We analyzed data from the Follow-up Care Use among Survivors (FOCUS) Survey, a cross-sectional population-based investigation of the follow-up care experiences among racially and ethnically diverse long-term (i.e., five years or more post-diagnosis) cancer survivors recruited from California NCI SEER registries. Ever and last year use of CAM modalities, as well as reasons for use, were assessed. Multivariable logistic regression models were applied to identify if predisposing, enabling and need for care characteristics described in the CAM Healthcare Model were associated with CAM use in the past year. Results: Long-term cancer survivors in the study (N=1,666) were predominately female (62%) and older (mean age=69.5), with breast (24%), prostate 26(%), colorectal (25%), ovarian (13%) and endometrial cancers (12%). Forty-two percent of survivors used CAM in the past year to relieve stress (28%), treat or prevent cancer from coming back (22%), relieve cancer-related symptoms (18%) and help deal with another medical condition (18%). Certain predisposing (i.e., female gender, higher optimism) and need for care factors (i.e., experienced cancer-related symptoms in the past two years, ever had depression/anxiety) were significantly associated with CAM use (p-values&lt;0.05). Insurance coverage, financial resources, and receipt of cancer-related follow-up care were not associated with CAM use. Conclusions: Cancer survivors report a high prevalence of CAM use even years after their initial diagnosis. It is important for healthcare providers to be aware of the higher prevalence of CAM use among subgroups of cancer survivors (i.e., female, high in optimism, have experienced cancer-related symptoms, have a history of anxiety/depression) in order to communicate effectively about these modalities with their patients.

An exploratory study of the follow‐up care needs of patients treated for colorectal cancer

To explore patient perceptions of their experiences of follow-up care after treatment for colorectal cancer. The optimal follow-up strategy for colorectal cancer is not known, and although patients are seen in traditional outpatient follow-up clinics, this system may not meet psycho-social and information needs. An exploratory qualitative study. In-depth interviews were conducted with 27 patients who had completed treatment for colorectal cancer. The data were analysed using thematic analysis. One dominant theme emerged from the data with several sub-themes. The dominant theme was 'knowing what to expect' after bowel surgery. The subthemes related to 'living with altered bowel function', the ways patients gathered information about their condition through 'trial and error' and 'information and support from specialist nurses'. Patients who did not have a stoma were particularly vulnerable and expressed a need for more information on knowing what to expect after surgery. The role of the colorectal nurse specialist was vital in providing information and support; in particular, nurse-led clinics provided continuity of care and information that was tailored to individual need. Traditional hospital follow-up does not always address patients' psycho-social and information needs. Nurse-led services were commented on favourably in terms of providing information that was tailored to individual need as well as being responsive to urgent patient concerns; future innovative strategies for providing follow-up care for patients with colorectal cancer should draw on the specialist knowledge and skills of these nurses. Nurse-led clinics and/or telephone follow-up by specialist nurses may be effective models of care for this particular patient group, providing appropriate access for meeting clinical, psycho-social and information needs.

“I wish I’d told them”: A qualitative study examining the unmet psychosexual needs of prostate cancer patients during follow-up after treatment

Objective To gain insight into patients’ experiences of follow-up care after treatment for prostate cancer and identify unmet psychosexual needs. Methods Semi-structured interviews were conducted with a purposive sample of 35 patients aged 59–82 from three UK regions. Partners were included in 18 interviews. Data were analyzed using constant comparison. Results (1) Psychosexual problems gained importance over time, (2) men felt they were rarely invited to discuss psychosexual side effects within follow-up appointments and lack of rapport with health care professionals made it difficult to raise problems themselves, (3) problems were sometimes concealed or accepted and professionals’ attempts to explore potential difficulties were resisted by some, and (4) older patients were too embarrassed to raise psychosexual concerns as they felt they would be considered ‘too old’ to be worried about the loss of sexual function. Conclusion Men with prostate cancer, even the very elderly, have psychosexual issues for variable times after diagnosis. These are not currently always addressed at the appropriate time for the patient. Practice implications Assessments of psychosexual problems should take place throughout the follow-up period, and not only at the time of initial treatment. Further research examining greater willingness or reluctance to engage with psychosexual interventions may be particularly helpful in designing future interventions.

Posttreatment Breast Cancer Surveillance and Follow-up Care Experiences of Breast Cancer Survivors of African Descent

Breast cancer survivors are at considerable risk for breast cancer recurrence and at higher risk of developing a new breast cancer compared with women never diagnosed. It is recommended that survivors undergo careful breast cancer surveillance as cancers detected early are more treatable. However, data indicate that surveillance among African American survivors, particularly mammography, is lower than that of white survivors. There is little published work focusing on general experiences of posttreatment breast cancer surveillance among survivors of African descent. In the current qualitative pilot study, key informant interviews were conducted in order to explore the following: (1) the extent of posttreatment surveillance information provided to or obtained by survivors of African descent; (2) the actual follow-up care received by survivors in the past year; and (3) factors that are either motivators of or barriers to care. Participants were 10 African American and African Caribbean breast cancer survivors. Survivors reported a number of factors that motivated them in obtaining follow-up care: a desire to maintain good health, concern about recurrence, support from healthcare providers, familial relationships, relationships with other survivors, and religious/spiritual faith. Survivors also reported barriers to care: fear of recurrence, low support from family and friends, lack of information about posttreatment follow-up care, and medical care costs. These results represent formative work that may inform similar studies examining factors in breast cancer surveillance and follow-up care in larger samples of survivors of African descent.

The Lazy Eye

<h3>Objectives</h3> Bariatric surgery is the most clinically effective treatment for people with severe and complex obesity, however, the psychosocial outcomes are less clear. Follow-up care after bariatric surgery is known to be important, but limited guidance exists on what this should entail, particularly related to psychological and social well-being. Patients’ perspectives are valuable to inform the design of follow-up care. This study investigated patients’ experiences of life after bariatric surgery including important aspects of follow-up care, in the long term. <h3>Design</h3> A qualitative study using semistructured individual interviews. A constant comparative approach was used to code data and identify themes and overarching concepts. <h3>Setting</h3> Bariatric surgery units of two publicly funded hospitals in the South of England. <h3>Participants</h3> Seventeen adults (10 women) who underwent a primary operation for obesity (mean time since surgery 3.11 years, range 4 months to 9 years), including Roux-en-Y gastric bypass, adjustable gastric band and sleeve gastrectomy, agreed to participate in the interviews. <h3>Results</h3> Experiences of adapting to life following surgery were characterised by the concepts of ‘normality’ and ‘ambivalence’, while experiences of ‘abandonment’ and ‘isolation’ dominated participants’ experiences of follow-up care. Patients highlighted the need for more flexible, longer-term follow-up care that addresses social and psychological difficulties postsurgery and integrates peer support. <h3>Conclusions</h3> This research highlights unmet patient need for more accessible and holistic follow-up care that addresses the long-term multidimensional impact of bariatric surgery. Future research should investigate effective and acceptable follow-up care packages for patients undergoing bariatric surgery.