User Needs Assessment: Chronic Kidney Disease

User Needs Assessment

Chronic Kidney Disease

Name: Shehab Sennah

Student Number: 999854910

Date: January 30, 2017

Course: MHI2004

Executive Summary:

Chronic kidney disease (CKD) is a term used to describe the disorders affecting the function and structure of the kidneys¹. The disease is classified into five stages, ranging from normal kidney function to kidney failure (failure requires patients to either have a kidney transplant or go on dialysis)². The purpose of this user needs assessment is to determine what various stakeholders need in the overall treatment of CKD. Using information obtained from a database search, online user forum search, online video search and online interview, a list of 10 user needs and requirements were outlined. These needs were divided according to two CKD stakeholders: the governing body (Ontario Renal Network) and the patients.

The Ontario Renal Network’s needs focus on increasing the accessibility of CKD treatment services and increasing the opportunity for the collection of patient data. Patients needs include improving: health literacy, empowerment, community networks, medication adherence, dietary adherence, clinician appointment management, physical activity tracking, and freedom.

These needs range from organizational goals to objective and emotional factors. This assessment provides a pathway for the development of a solution that truly represents the needs of stakeholders in the treatment and management of chronic kidney disease.

Purpose

Chronic kidney disease (CKD) is a term used to describe the disorders affecting the function and structure of the kidneys. The disease can be highly variable among those affected due to differences in cause, severity, and rate of progression¹. The disease is classified into five stages, ranging from normal kidney function to kidney failure². Unfortunately, those affected with CKD often have lower physical, psychological and social well beings, especially in the later stages of the disease². The purpose of this user needs assessment is to determine what various stakeholders need in the overall treatment of CKD. User requirements will be explored by determining users behaviors, experiences, goals, and priorities in CKD treatment. The collected user needs will then be used in future attempts to develop a prototype and solution.

Methodology

This assessment focused on all staged of CKD and its treatment. In order to develop an understanding of the needs and requirements of CKD stakeholders, four methods were used: database search, online user forum search, online video search and online interviews.

The University of Toronto Library database was used to conduct a literature review. Firstly, searches were made to find papers that outlined the disease, causes, and treatment (Keywords: CKD, Chronic Kidney Disease, Treatments, Causes). Secondly, searches were then geared towards finding more personal accounts of patient struggles, needs, and requirements (Keywords: CKD, Chronic Kidney Disease, Struggles, User Needs, Requirements). Finally, upon gaining a rough understanding of some potential user needs and requirements, the database was used to find more specific papers. For example, if it was determined that a patient need was ‘better medication adherence’, searches were made for papers specifically regarding this issue. It should be noted that information on the Ontario Renal Network was obtained using a search on the ‘Google’ search engine.

Forums were used to obtain first-hand patient knowledge. The ‘Google’ search engine was used to find relevant online forums (Keywords: CKD, Forum). The online forums used in this report were hosted on ‘patient.info’³ and ‘kidneypatientguide.org’⁴. Online videos hosted on ‘YouTube’ were also used to gain first-hand insight into life with the disease⁵ (Keywords: Living, With, CKD). Relevant contend obtained from these searches were cited in this report.

It was necessary to establish further specification of user needs and requirements, hence, an open interview was conducted on the discussion website ‘Reddit’⁶. This interview method consisted of posting general questions regarding day to day experience with managing CKD. Questions were also asked regarding currents methods and areas of improvement. Respondents who volunteered to answer some of these questions publicly on the website were asked follow-up questions (4 total respondents, 2 respondent to further questions). Two volunteers responded to questions privately using the ‘direct message’ feature. Information used in this report from this interview method was cited accordingly.

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The list of requirements was developed using a combination of the resources used. The literature review outlined the various stakeholders in CKD treatment, the general trends, and their behaviors. Requirements were then refined using the various sources of first-hand patient information. The online interview and the online forums were the most valuable sources for determining user needs and requirements.

User Requirements

Two main stakeholders were identified as having the most relevant needs and requirements in the treatment of CKD: the Ontario Renal Network (ORN) and the patients. The ORN is an example of a governing body for CKD care, while patients are at the forefront of CKD. Although other stakeholders exist, such as physicians and families, they do not have a direct implication with the core requirements.

Ontario Renal Network

Treatment Accessibility

The ORN provides the resource for the kidney care system in Ontario. They lead, direct, organize and manage the delivery of CKD services in Ontario⁷. One of many goals outlined by the ORN is to increase the availability of CKD medical services⁸. This not only includes the number of services, but the accessibility to people with socio-economic and geographical disadvantages^9,10. Patients also share the need for increased accessibility, and the increased awareness of the options currently available to them⁶. Accessibility can be improved through increased communication of available resources to patients. It is evident that the requirement of better treatment accessibility would be of benefit to all CKD stakeholders.

Data Collection

To improve the quality of CKD treatment in Ontario, the ORN has outlined the need to collect and report data on patient experiences⁷. This data can benefit overall CKD in the forms of front-line care, health system management, population health, and research¹¹. It is imperative that methods are in place for the collection of meaningful and insightful data.

Patient

Health Literacy

Improving the health literacy of CKD patients is a key determinant in increasing patient self-management, and has been linked to improving treatment outcomes^12,13. This is a shared need between physicians and patients as health literacy is crucial in patient-physician communication¹⁴. As with all other self-management aspects, increased health literacy can postpone the need for dialysis¹⁵. Physicians must have diagnosis and treatment information presented to patients in a way that can be understood by patients¹³. Patients sometimes require additional information regarding treatment options, outside of what was already provided to them from the physician⁶. It is clear that increasing health literacy can have a positive effect on CKD patients.

Empowerment

One of many patient goals is to have a greater degree of autonomy and control over their healthcare. This has been shown to have a positive effect on treatment response, psychological adjustment, weight fluctuation and number of hospitilizations¹⁶. Patients can be empowered to become more involved in their health by actively learning about themselves and their bodies. CKD patients can benefit by identifying questions they have for physicians, daily blood pressure, pains they experience and weight fluctuations¹⁵. This will help empower patients to evaluate their current lifestyles and encourage changes based on the information they collect^6,16. In addition, this information can be used to supplement information available during physician consultations to make informed decisions⁴. The need for patient empowerment is a necessary target for positive CKD treatment.

Community Network

There is a need among patients to develop support groups with others in similar circumstances. These groups can be an avenue of emotional comfort, advice, and information¹⁷. It encourages patients as they realize that they are not alone⁵. It is also a tool that allows patients to become empowered and in control of their healthcare¹⁸. However, there is expressed concern over the difficulty in finding support groups due to many patients coping in private⁶. There is a need for CKD patients to have efficient and timely access to support groups to benefit their overall treatment.

Medication Adherence

Poor medication adherence is a common issue with CKD patients, affecting 34% of patients in a study by Sontakke et al. One of the causes for this non-adherence is the complex dosing schedule^12,19. Depending on the stage of the disease, CKD patients can be required to take more than 20 pills throughout the day²⁰. In addition, many medications prescribed to CKD patients have no instant and visible effects, therefore, the consequences of not taking the medications is lowered¹⁵. To facilitate better adherence, patients require simplified dosing schedules and reminders of medications they should take^20,21. It is also beneficial for patients to be alerted, or reminded, when to order new medication. In many cases, they are caught off-guard by medication depletion, further complication their daily routine⁴.

Dietary Adherence

Many patients also feel overwhelmed with the number of things they have to keep track of for their diet²². CKD patients require a special diet due to their altered metabolism. According to the stage of their disease, patients must follow a diet with specific levels of calories, protein, water, sodium, phosphorus, potassium and vitamin D²². Remembering and keeping track of their nutrient intake can be a struggle for patients, who would benefit from reminders⁴. Patients have also communicated difficulties with finding specific nutrition information for their foods⁶. For example, phosphorus, potassium and vitamin D are not required by the Canadian Food Inspection Agency to be included on food labels²³. Thus, current methods of keeping track involve acquiring the information from an external source and making the necessary calculations based on portion size. People who live with CKD require alternative methods for dietary reminders and recording of nutritional information.

Clinician Appointments

Patients diagnosed with CKD often receive treatment, advice, and care from a range of clinicians and healthcare professionals⁷. Depending on the stage of the disease, patients can be in constant contact with a family doctor, nephrologist, dietician, social worker, pharmacist, chiropodist and a neuromuscular evaluator²⁴. In addition, patients in the late stages of the disease may have even more encounters with healthcare environments due to the need of dialysis 3-4 times a week²⁵. Tracking clinician appointments is a routine activity for patients¹⁵, but can also be an overwhelming task in combination with other aspects of daily living⁶. There is a need for effective documenting and tracking of clinician visits by CKD patients.

Sleep and Exercise Tracking

Sleep disturbance is a common complaint among patients with CKD, especially those on dialysis²⁶. It affects about 50% of patients in the later stages of the disease²⁷. Poor sleep quality can have negative consequences on the progression of CKD. Furthermore, sedentary activity during the day may negatively affect sleep at night²⁶. While exercise seems to benefit sleep, it also benefits CKD through improvements in blood pressure, blood flow, and mental health²⁸. Physicians require that those with CKD increase the amount of physical activity they perfrom²⁹. Surely, patients need to be aware of how much sleep and exercise they are getting.

Normality and Freedom

Patients with CKD, at all stages, generally express the need to achieve normality in their everyday life¹⁶. Normality is achieved through the discovering of the limitations imposed on them by their illness, and learning to function within these limitations. Self-management strategies, including some of the already mentioned needs, play a big role in one’s self-discovery. However, these practices, like tracking of diet, must be performed in such a way that is not time-consuming to allow them to be mobile and free^6,16. Patients express dismay over the time needed to engage in appropriate self-management. Needs should be satisfied in such a way that does not contribute to the already overwhelming nature of CKD³. It is clear that while the previously mentioned needs address serious requirements, they should be fulfilled in such a way that does not negate the ability to live normally and freely.

Conclusion:

The purpose of this user needs assessment is to determine what various stakeholders need and require in the overall treatment of CKD. Information from scholarly databases, online forums, online videos and online interviews were refined into 10 user needs. These needs range from organizational goals, to objective and emotional factors. This assessment provides a pathway for the development of a solution that truly represents the needs of stakeholders in the treatment and management of chronic kidney disease.

User Needs Assessment: Chronic Kidney Disease

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