To increase validity, two participants were selected randomly and contacted again to read the descriptions and they agreed that the analyses represented their personal experiences. Common themes were created by merging similar statements for every category. The transcriptions were written in their ethnic language following the completion of the study and analysis, thereafter translated into English but retaining the original meaning.
Trustworthiness The model of Guba and Lincoln of trustworthiness in qualitative research was used. The following criteria to ensure trustworthiness are truth-value, applicability, consistency and neutrality [ 8 ]. Applying strategies of credibility ensured truth-value. The researcher spend hours interviewing and kept a reflective journal, and made observations during the interviews, checked the themes and categories of statements with the participants, and focused on their experiences of living with cancer.
Applying strategies of transferability ensured applicability.
The researcher provided a clear description of the demographics of participants, and gave dense description of the results with supporting direct quotation of the participants. Similarly applying strategies of dependability ensured consistency. A dense description was given of the research methods used in this study. Neutrality was ensured by confirmability. The process undertaken to conduct research was provided [ 8 ]. Ethical Principles Ethical principles were applied accordingly following the guidelines of the Democratic Nursing Organisation of South Africa [ 9 ].
These ethical principles were applied as follows, participants were not identified throughout the study, and they were interview privately in their comfortable places. All participants gave a written consent after full explanation that they can withdraw anytime without penalty. The participants benefited through this research because they were enabled to express their feelings on their needs and plight of cancer patients in rural communities of Vhembe.
All participants received feedback on the research results and we were able to form a cancer survivorship program which is in its infancy where the participants and their family members are sharing and supporting each other on improving their quality of life. Results Five themes were identified during analysis in which Creswell qualitative method of analysis was utilized [ 7 ]. Poor communication and attitudes, experiencing body changes, Sense of withdrawal and depression and problems with follow-up care Table 1. Sometimes failing to give proper information may be due to lack of knowledge in a particular field, such as general practitioners.
This is supported by Nguyen GT et al. Another factor was that a doctor might not be an expert in the medical issue at hand, he might not be able to offer sufficient guidance. It is thus imperative that patients be referred to appropriate experts. However, language and cultural barriers can sometimes affect communication, and patients reluctant to ask and question issues pertaining to their health.
Communicating your illness to your family can also be distressful as breaking the news may affect relationships in the family situation. I remember I had purple marks on my chest for radiation treatments. My skin was pale; my hair was starting to fall out.
They get information and ideas from other children and what they see in everyday life, including what they see on TV. Without the right information, children may fill in gaps with their imaginations many times, what they imagine is far worse than reality. Communication is an integral role for health professionals involved in cancer care, and should take into account that it should not cause harm, and distress to patients and families; it should be emotion- centered and provide a hopeful and supportive atmosphere.
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Patients should also be supported in the process on how to break news to their loved ones when they are ready. Adjusting to body changes Cancer and its treatment can cause physical changes. Some people feel insecure about how these changes affect their body and their self-image. Other treatments can affect how you feel. Side effects from cancer treatment, such as weight loss or weight gain, hair loss, and skin changes can also change the way you look.
Fatigue can make it harder for you to care for your appearance. Body changes from cancer treatment can range from hair loss to the loss of a limb. These kinds of changes can be hard to handle because others can see them. Many people who lose hair choose to wear scarves, wigs or hats. Symptomatic effects of treatments Cancer patients undergoing chemotherapy experience many symptoms which they can manage when given the appropriate amount of information. However, self-management may not be sufficient or plausible for everyone. Many patients have had the experience of what psychologists call classically conditioned vomiting.
That is, vomiting even before they get to the cancer center because of the anticipation that they will vomit after treatment.
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Cancer treatment is an ongoing challenge, after treatment, patients do not return to a pre-cancer diagnosis state. Particularly endocrine symptoms may have a substantial impact on quality of life. Some patients experience moodiness or are confused or unclear as to where they are. This may be the result of certain medications. Many of these effects are temporary and eventually go away. They are not life threatening and the well-being of the patient improves and anxiety is reduced if information is provided about managing the side-effects. Withdrawal and depression Cancer diagnosis affect the quality of life, once diagnosed a person emotional and psychological state becomes disturbed.
Having cancer or treatment can also affect your body image. When your skin color change and start wasting due to side-effects of treatment, you are said to be having AIDS. You may feel less confident or afraid of rejection. Some patients find receiving bad news difficult and react with disbelief, humor, denial, fear, hope both realistic and unrealistic guilt, anxiety and prolonged rage. Reactions to specific family members may include shielding and anticipatory grief [ 13 ]. Follow-up treatment care causes much anxiety to patients because they need information about the progress of their conditions and be reassured that the prognosis is good, so lack of communication can create problems, issues relating to faulty equipments or those that are not working should be reported early to the referring hospital so that patients cannot travel unnecessary.
Oshima S et al. Follow-up treatment is important when done in the same hospital by the same doctors that treated the patients because they will be having an understanding on how patients experience follow-up and post treatment care. Discussions The findings demonstrated that a substantial number of patients still have problems with cancer diagnosis, how it has been communicated, and communication dynamics related to terminology, medical test and the side effects of treatments and adjusting to body changes, all these factors leads to high levels of anxiety, depression and high levels of distress.
This is especially true when you are dealing with a complex group of diseases like cancer. Knowledge can help lessen the fear of the unknown. Furthermore body changes and adjusting to new lifestyle due to cancer its very disturbing, especially for the males, sexually is a very important aspect among Africans since a man must display his manhood by having many wives and off-springs, to be seen as a respectable man in the community.
Hiccups of follow-up care stemming from chemotherapy, surgery, radiation treatment and hormone therapy rarely exist in isolation and care for these problems are fragmented, as some doctors believe certain problems can go untreated, regarding them as minor or will be better with time, such information does not provide emotional comfort for the patient instead causes more anxiety for the patient. Further, oncologists and surgeons are often poorly linked to physical therapists that may be able to help with side effects, so it is important to take care of the needs of the patient and refer for further management.
Furthermore patients reported poor service delivery when going for follow-up and finding resources being inadequate or absent; this increases level of anxiety and increases the level of dissatisfaction [ 14 ]. Limitations The study was exclusively conducted in one district of Limpopo Province. Therefore generalization of findings is not possible. However, there is a possibility and need for research to be replicated in other districts among other ethnic groups.
The sample of participants had limited type of cancers, it may be necessary that a wide range of cancers be included in order to get rich narrative data and participants perspectives regarding their cancers. Conclusion The study reveals opportunities for providing comprehensive cancer care both for cancer patients and their relatives. Sexual problems should be an important issue in counselling. Patients, their caregivers, and providers all express the need for better patient information, improvements in care coordination, and for multidisciplinary care that includes psychosocial support and the importance of timeliness of care.
In addition, patients desire more personalized care, improved communication with providers, and additional clarity regarding who has responsibility for their care.
Overall, these findings suggest that there may be a need to develop improved initiatives that address patient-provider communication and information sharing, as well as initiatives to provide multidisciplinary care at the point of an initial diagnosis. However, there may also be barriers to these initiatives as noted by providers: Although the search strategy was designed to be comprehensive, it is possible that additional publications addressing the quality of cancer care were not identified. Although MEDLINE and PubMed databases were searched, there are other sources of information, such as meeting abstracts and organization reports, that were not explored as sources of information for this study.
The summaries and themes cannot necessarily be considered representative of the views of these stakeholder groups, because many of the studies identified in the literature were designed to explore specific concepts, which contributed to the themes that were chosen. There is always the risk of a subjective interpretation of common themes in a qualitative review of the literature. Although the current study focused on quality care during chemotherapy, to be consistent with the methods of the earlier review, 5 there is a need to understand the quality cancer care perspectives in the survivorship community, which is not represented in this present article.
In addition, because 9 articles were identified that focused on end-of-life care and up to 25 other articles that dealt with other treatment or follow-up periods during survivorship, there may be sufficient information to evaluate the perspectives of cancer care for periods of cancer-related care beyond the chemotherapy treatment period. The full trajectory of care throughout the survivorship period is therefore recommended as a topic for future research.
The themes identified in this study may serve as a starting point for initiatives or programs that are designed to improve quality of cancer care and to identify measures associated with factors that are important to patients and to providers. Initiatives that focus on enhancing the quality of cancer care may need to consider the limitations and barriers to care noted in this article, especially regarding the patient—provider communication and information sharing, as well as the need for reimbursement to support patient-centered care.
To increase the likelihood of success, such initiatives should include strategies to mitigate these barriers.
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Future studies are warranted to address the full range of quality care throughout the survivorship period and through end-of-life care, as well as to better understand payer perspectives. Dr Hess is an employee of Eli Lilly and Company. Dr Pohl is an employee of and a stockholder of Eli Lilly and Company. There has recently been much focus in the mainstream media on the quality of care that is delivered in the US healthcare system, specifically in hospitals.
However, the challenges that organized medicine and the general public have with identifying, or even defining, quality are problematic. Some of the parameters that CMS has examined include the frequency of rehospitalization within 30 days postdischarge, hospital-acquired infections, adverse events, surgical errors, and mortality. These data have mostly been aggregated by the Agency for Healthcare Research and Quality and by CMS, and have been widely reported and used to rate hospitals. Transparency and the dissemination of this information can only help patients and payers identify which organizations are committed to improving the care they deliver to patients.
Nevertheless, few, if any, of these analyses measure value, because they fail to impute the cost of care, which can vary from one hospital to another by several-fold. Quality care in the treatment of patients with cancer can be even more difficult to define and measure. Although neither program has been widely adopted, both represent important efforts toward measuring and improving care quality. Dr Hess and Dr Pohl review cross-sectional retrospective and longitudinal studies measuring quality in cancer care from the perspectives of patients, physicians, and other stakeholders, but payer studies are lacking.
The authors should be commended for their important and timely contribution to this discussion. However, their research is focused on quality that is associated with chemotherapy; in reality, only a subset of patients with cancer receive chemotherapy, and additional studies are needed to assess the full spectrum of cancer care, including survivorship, end-of-life care, supportive care, radiation, and hospice care. Recently, Halpern and colleagues examined quality parameters in patients with cancer at community hospitals, based on 5 National Quality Forum—approved quality-of-care measures for patients with breast or colon cancer.
The Affordable Care Act has made a tremendous financial investment in defining, measuring, and improving the quality of care for patients with cancer and other chronic diseases. The expectation is that this investment and increasing focus by researchers will better define quality and help to improve the care that patients with cancer receive in the outpatient setting and at US hospitals. New ongoing initiatives highlight the importance of quality of care for patients and for providers. Quality measures are being introduced into the clinical setting, but few payers are willing to reimburse providers in any significant manner for improvement in quality or outcomes.
Payers need to look more closely at quality and outcomes and reassess quality measures as important components of reimbursement. National Center for Biotechnology Information , U. Am Health Drug Benefits. Find articles by Gerhardt Pohl. This article has been cited by other articles in PMC. Abstract Background Approximately 1. Objective To review the current understanding and perspectives of key stakeholders regarding quality cancer care for adult patients with cancer who are receiving chemotherapy-based treatment regimens.
Methods This systematic qualitative literature review involved a search of MEDLINE and PubMed databases for articles that were published between January and May using a predefined search strategy with specific Medical Subject Headings terms encompassing 3 core concepts—cancer, chemotherapy, and quality of healthcare.
Results The search strategy identified articles that were reviewed for eligibility. Conclusion Thematic elements related to cancer quality were relatively consistent between patients and providers; no additional information was found regarding payer perspectives.
Results The search strategy identified articles that were reviewed for eligibility Figure 1 , page Open in a separate window. Table 1 Eligible Studies: Patient Perspectives Of the eligible articles, 11 included perspectives from patients with cancer and caregivers. Patient theme Content Information Defining: Provider Perspectives Provider perspectives were obtained from physicians, nurses, social workers, and clinic staff.
Provider theme Content Access to care Barrier: Thought Leader Perspectives Perspectives were obtained from 23 thought leaders in one study. Discussion This study has updated an earlier review of perspectives of quality care in cancer, because there have been more recent initiatives and mandates related to quality healthcare. Limitations Although the search strategy was designed to be comprehensive, it is possible that additional publications addressing the quality of cancer care were not identified. Conclusion The themes identified in this study may serve as a starting point for initiatives or programs that are designed to improve quality of cancer care and to identify measures associated with factors that are important to patients and to providers.
Contributor Information Lisa M. CA Cancer J Clin. Cancer treatment and survivorship statistics, Patel KK, Tran L. Opportunities for oncology in the patient protection and affordable care act. Advancing performance measurement in oncology: A review and characterization of the various perceptions of quality cancer care. Understanding high-quality cancer care: Toward improving the quality of cancer care: J Natl Cancer Inst Monogr. Dulko D, Mooney K. Effect of an audit and feedback intervention on hospitalized oncology patients' perception of nurse practitioner care.
J Nurs Care Qual. Cancer patient assessment and reports of excellence: Problems in transition and quality of care: Satisfaction with care among low-income women with breast cancer. J Womens Health Larchmt. The relationship between perceived service quality and patient willingness to recommend at a national oncology hospital network.
Using patients' experiences to identify priorities for quality improvement in breast cancer care: Quality of breast cancer care: A quality review of the timeliness of breast cancer diagnosis and treatment in an integrated breast center. J Am Coll Surg. The quality of cancer patient experience: Qual Saf Health Care. Healthcare team members' perception of staffing adequacy in a comprehensive cancer center. High performance teamwork training and systems redesign in outpatient oncology. Barriers to accessing quality health care for cancer patients: Soc Work Health Care.
Association between adherence to National Comprehensive Cancer Network treatment guidelines and improved survival in patients with colon cancer. Adherence to treatment guidelines for ovarian cancer as a measure of quality care. Information technology interventions to improve cancer care quality: Emerging Definition and Measurements, but Reimbursement Lagging.
Craig Deligdish , MD.
Perspectives of Quality Care in Cancer Treatment: A Review of the Literature
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