Maintenance HD patients’ characteristics.
We aimed to identify hemodialysis (HD) patients’physical and psychosocial problems using the International Classification of Functioning, Disability and Health (ICF)-based checklist we developed. The ICF belongs to the WHO’s family of international classifications, and it is the instrument for comprehensive understanding of patients. HD patients have diverse physical and psychosocial problems, and ICF-based approach may be useful to improve management and quality of life (QOL) of patients on HD. In this article, we introduced the new data associated with physical and psychosocial problems of 222 patients in HD, which extends our previous report (Tsutsui et al. 2009).
In Japan, the number of patients on HD was 36,397 in 1980 and increased to 290,675 in 2009 (Patient Registration Committee, Japanese Society for Dialysis Therapy, 2010). In addition to the physical limitations in functioning caused by renal failure and its comorbidities, HD patients have various restrictions resulting from HD therapyrequiring radical lifestyle changes. Therefore, HD patients tend to have both physical and psychosocial problems. Thus, evaluation of QOL is especially important, and the Kidney Disease Quality of Life (KDQOLTM) (Hays et al, 1994) and the Kidney Disease Quality of Life-Short Form (KDQOL-SFTM) (Hays et al, 1994) have been widely used. The KDQOL-SFTM includes multi-item scales targeted at the particular health-related concerns of individuals who have kidney disease and are on dialysis. In the present study, we aimed to investigate the use of the International Classification of Functioning, Disability and Health (ICF) (WHO 2001), whichis the instrumentfor comprehensive understanding of patients. In addition to evaluate physical and psychosocial problems of patients, ICF can be used as a tool for team medical treatment to make plans for treatment and care of patients. We have reported the checklist for HD patients based on ICF (Tsutsui et al. 2009). The data in this article include those of patients on HD with diabetic nephropathy, which was excluded in the previous report.
2. International classification of functioning, disability and health
The ICF was published by the World Health Organization (WHO) in 2001 to standardize descriptions of health and disability. The ICF and International Classification of Disease-10thRevision (ICD-10) constitute the core classification in the WHO’s family of international classifications, which provides a valuable tool to describe and compare the health of populations in an international context. The information on mortality (provided by ICD-10) and on health outcomes (provided by ICF) may be combined in summary measures of population health.
The overall aim of the ICF classification is to provide a unified and standard language and framework for the description of health and health-related states. It defines components of health and some health-related components of well-being (such as education and labor). An ICF-based approach can also be useful to collect information on a broad set of impairments, activity limitations and environmental factors that contribute to improve or worsen patients’ functioning and disability status. Such information could provide a common framework for research, clinical work and social policy and help in improving the identification of needs related to health and social services, and related interventions.
The ICF provides a description of situations about human functioning and its restrictions and serves as a framework to organize this information. The ICF is based on the biopsychosocial model, an integration of medical and social models. The patient’s functioning is conceived as a dynamic interaction between the underlying health condition and specific personal and environmental factors. The following diagram is one representation of model of disability that is the basis for ICF (Figure 1).
The ICF organizes information in the two main subdivisions: Part 1 covers functioning and disability and Part 2 covers contextual factors. Each of these two parts is divided into components. Components of functioning and disability consist of "Body functions and structures" and "Activities and participation". Components of contextual factors consists of "Environmental factors" and "Personal factors". "Body functions" relate to the physiological and psychological functions of the body. "Body structures" are anatomic parts of the body such as organs, limbs and their components classified according to body systems. "Activities" is the execution of a task or action by an individual. It represents the individual perspective of functioning. "Participation" is a person’s involvement in a life situation. It represents the societal perspective of functioning. "Environmental factors" refer to all aspects of the external or extrinsic world that from the context of an individual’s life such as social attitudes and values, social systems and services, policies, rules and laws. "Personal factors" are those related to the individual such as age, gender, social status, and life experiences, which are not currently classified in ICF, although users may incorporate in their applications of the classification (WHO 2001).
Every component of the ICF has a hierarchical structure. The categories of ICF are classified by the code in which the letters (b, s, d, and e) is combined with the number. The letters b, s, d and e refer to the components “Body functions” (b), “Body structures” (s), “Activities and participation” (d), and “Environmental factors” (e). The letters are followed by a numeric code that defines the chapter number (first digit) and the category levels up to the fourth level (suffix of two, three, or four digits).
2.1. ICF checklist
The ICF in its current version consists of 1424 codes. Therefore, it is necessary to select a subset of the codes as needed for any given purpose. One of such activities is the development of the ICF checklist (WHO, 2003). The ICF checklist consists of a selection of 128 first- and second-level categories from the whole ICF classification system. It provides a relatively simple-to-use questionnaire, and is a generic template for a structured interview. The ICF checklist makes it possible to generate a profile of the individual patient on the functioning and disability in clinical practice. Of the 128 categories, 32 belong to “Body functions”, 16 to “Body structures”, 48 belong to “Activities and participation”, and 32 to “Environmental factors”. The ICF checklist utilizes a “qualifier” to evaluate each component, which is considered to be positive when patients have any level of impairments (i.e. mild, moderate, severe, or complete) in “Body functions” and “Body structures”; any level of activity limitations or participation restrictions in “Activities and participation”; and any level of barrier in “Environmental factors” (WHO 2003, Ewert et al. 2004).
2.2. ICF core sets
The ICF core sets are developed for medical conditions that have high impact on a patient’s functioning and disability (Stucki et al. 2002). They have been developed in a formal decision making and consensus-based process integrating evidence gathered from studies for chronic conditions (Weigl et al. 2004, Brockow et al. 2004, Ewert et al. 2004). The ICF core sets for patients with a determined health condition represent a selection of ICF categories out of the whole classification that can serve as minimal standards for reporting of functioning and health for clinical studied and clinical encounter or as standards for multiprofessional. The ICF core sets contain categories not only on anatomic and pathophysiologic changes but also on functioning in every-day activities and relevant environmental factors.
These ICF core sets are to be developed in two levels: A brief and comprehensive ICF core sets. The brief ICF core sets includes only the most important ICF-categories and is intended to be rated in all patients of a clinical study. However, the comprehensive ICF core sets include all categories that are typically limited in the selected health condition, and are created to guide multidisciplinary assessment (Stucki et al. 2002).
3. Identification of HD patients’ physical and psychosocial problems
The process of developing the checklist for the HD treatment is briefly described.
Initially, we interviewed 32 HD patients using ICF checklist.They were interviewed for each category of the ICFchecklist whether they had problems since starting HD treatment.For example, in the category of b134Sleep, patients were interviewed “Have you ever experienced insomnia, nocturnal awakening, or hypersomnia since starting HD treatment?” The interviewer questioned about the details of their problems when patients answered “yes”.The interview was done by the first author who was the medical social worker.All categories that at least 1patient reported a problem were selected as problem categories. As a result, 57 categories of the ICF checklist were selected for the checklist for the HD treatment. Thirty-five categories in the ICF that were not included in the ICF checklist were chosen based on the consensus of the conference that included physician, nurses, and medical social worker. These 92 categories consisted of 39 categories from the “Body functions” component, 13 from the “Body structures” component, 20 categories from the “Activities and participation” component, and 20 categories from the “Environmental factors” component. Finally, we added 8 categories that are not included in the ICF categories considering the specificities of HD.These categories are following; Functions of vascular access in “Body functions” component, Vascular access in “Body structures” component, Going to hospital, Managing weight, Angiostasis by oneself after drawing out needle, and Preparing a dialysis diet in “Activities and participation” component, Dialysis professionals in “Environmental factors” component. Taken together, the checklist for the HD comprises 100 categories.
3.1. Physical and psychosocial problems of maintenance HD patients
We interviewed 222 maintenance HD patients using the checklist for HD patients. The characteristics of them are shown in Table2.
3.1.1. Body functions
The percentage of patients on maintenance HD who reported problems in each category of “Body functions” component is described in Table 3.
|Age of HD introduction (years)||52±13|
|Duration of HD (years)||9.1±8.0|
|Obstructive urinary disorder||2|
|Pregnancy-induced kidney disease||1|
|Systemic lupus erythematosus||1|
|b110 Consciousness functions||25.7|
|b1300 Energy level||39.2|
|b134 Sleep functions||46.4|
|b140 Attention functions||32.9|
|b152 Emotional functions||26.6|
|b210 Seeing functions||50.9|
|b240 Sensations associated with hearing and vestibular function||37.8|
|b250 Taste function||20.7|
|b260 Proprioceptive function||36.9|
|b265 Touch function||16.7|
|b270 Sensory functions related to temperature and other stimuli||12.2|
|b280 Sensation of pain||45.9|
|b410 Heart functions||45.9|
|b415 Blood vessel functions|
§ Functions of vascular access
|b420 Blood pressure functions||75.7|
|b430 Haematological system functions||14.0|
|b440 Respiration functions||26.6|
|b4550 General physical endurance||50.5|
|b4551 Aerobic capacity||45.9|
|b515 Digestive functions||24.8|
|b525 Defecation functions||51.4|
|b530 Weight maintenance functions||22.5|
|b535 Sensations associated with the digestive system||33.8|
|b545 Water, mineral and electrolyte balance functions||26.6|
|b555 Endocrine gland functions||14.0|
|b610 Urinary excretory functions||61.3|
|b620 Urination functions||47.7|
|b64 Sexual functions||18.0|
|b670 Sensations associated with genital and reproductive functions||12.6|
|b710 Mobility of joint functions||43.2|
|b730 Muscle power functions||12.6|
|b735 Muscle tone functions||40.5|
|b780 Sensations related to muscles and movement functions||64.4|
|b810 Protective functions of the skin||59.9|
|b820 Repair function of the skin||36.9|
|b840 Sensation related to the skin||74.8|
|b850 Functions of hair||29.7|
In the “Body functions” component, problems of patients on maintenance HD are associated with sleep, fatigue, defecation, blood pressure, urination, muscle, skin, and those related to the symptoms or complication of kidney disease. Itching of the skin (Danquah et al. 2010, Caplin et al. 2011), sleep (Čengić et al. 2010, Danquah et al. 2010), blood pressure (Van Buren et al. 2011, Caplin et al. 2011), muscle cramps (Danquah et al. 2010, Weisbord et al. 2008), and constipation (Wu et al. 2004, Yasuda et al. 2002) have been reported as significant problems in patients with maintenance HD. According to the interview, these patients tend to have problemssuchas itching, muscle cramp, or low blood pressure not only in everyday life but also during HD treatment, which seem worry them substantially.
3.1.2. Body structures
The percentage of maintenance HD patients who reported problems in each category of component of “Body structures” component is described in Table 4.
In the “Body structures” component, a high percentage of patients on maintenance HD reported problems related to nail, disorder of urinary system, and eye disease. Disorder of nail structure such as half-and-half nail and tinea unguium (Saray et al. 2004, Dyachenko et al. 2007), disorder of urinary system such as pyuria and loss of urination (Vij et al. 2009, Fasolo et al. 2006), and eye disease such as diabetic retinopathy andglaucoma(Chiu et al. 2008, Varbec et al. 2005) have been reported.
|s220 Structure of eyeball||41.0|
|s410 Structure of cardiovascular system||30.2|
§ Vascular access
|s550 Structure of pancreas||0.9|
|s5801 Thyroid gland||12.1|
|s5802 Parathyroid gland||14.7|
|s610 Structure of urinary system||61.3|
|s630 Structure of reproductive system||6.8|
|s730 Structure of upper extremity||28.4|
|s750 Structure of lower extremity||13.5|
|s770 Additional musculoskeletal structures related to|
|s830 Structure of nails||56.3|
3.1.3. Activities and participation
The percentage of maintenance HD patients who reported restrictions in each category of “Activities and participation” component is described in Table 5.
In the “Activities and participation” component, a high percentage of patientsreported restrictions related to actions that use upper limbs, job, and hobby. Consistently, actions that use upper limbs (Tander et al. 2007, Namazi et al. 2007), job (Panagopoulou et al. 2009, Kutner et al. 2010), and hobby (Al Eissa et al. 2010) have been reported to be highly restricted. The time restriction due to the regular dialysis and the need to protect vascular access seem to be major factors to affect patients’ restriction in activities and participation.
3.1.4. Environmental factors
The percentage of maintenance HD patients who reportedbarriers in each category of “Activities and participation” component is described in Table 6.
In the “Environmental factors” component, a high percentage of paients reported as barriers in categories related to transportation service, social security, and labor. Transportation (Diamant et al. 2010, Gorden et al. 2003), social security such as medical fee (Holley et al. 2006, Gracia-Gracia et al. 2005) and labor (Neri et al. 2009, Muehrer et al. 2011) have been reported as barriers. Maintaining employment is one of the most serious problems. We reported that 41% of the patients in the previous study (Tsutsui et al, 2009) were terminated, transferred to a different position, demoted, or changed their employment agreement (from
|Activities and Participation||%|
|d220 Undertaking multiple tasks||14.0|
|b240 Handling stress and other psychological demands||17.1|
|d430 Lifting and carrying objects||35.1|
|d440 Fine hand use||23.0|
|d465 Moving around using equipment||9.9|
|d470 Using transportation||15.8|
§ Going to hospital
|d510 Washing oneself||9.9|
|d520 Caring for body parts||9.5|
|d570 Looking after one's health|
§ Managing weight
§ Confirmation of vascular access
§ Angiostasis by oneself after drawing out needle
|d630 Preparing meals|
§ Preparing a dialysis diet
|d640 Doing housework||9.5|
|d660 Assisting others||2.7|
|d845 Acquiring, keeping and terminating a job||24.8|
|d850 Remunerative employment||21.6|
full-time to part-time employment). According to Japanese statistics, 37.7% of men HD patients and 43% of women HD patients were terminated or retired in the past 5 years (Japan Association of Kidney Disease Patients, Japanese Association of Dialysis Physician. 2007). The problem related to the payment of medical fees is another serious concern for patients. Patients on HD had received a total exemption of medical fees until the coming into force of the "Law for Independence of Persons With Disabilities“ in 2006. According to a report (Japan Association of Kidney Disease Patients, Japanese Association of Dialysis Physician. 2007), 75.2% of Japanese HD patients greatly hope for “continuation of medical security of HD treatment“.
|e110 Products or substances for personal consumption||27.5|
|e310 Immediate family||8.1|
|e325 Acquaintances, peers, colleagues, neighbors and community members||5.0|
|e330 People in positions of authority|
e350 Domesticated animals
|e355 Health professionals|
|e410 Individual attitudes of immediate family members||4.1|
|e420 Individual attitudes of friends||4.1|
|e425 Individual attitudes of acquaintances, peers, colleagues, neighbors|
and community members
|e430 Individual attitudes of people in positions of authority||3.6|
|e440 Individual attitudes of personal care providers and personal assistants||2.3|
|e450 Individual attitudes of health professionals||18.5|
|e465 Social norms, practices and ideologies||17.1|
|e540 Transportation services, systems and policies||10.4|
|e555 Associations and organizational services, systems and policies||14.9|
|e560 Media services, systems and policies||23.4|
|e570 Social security services, systems and policies||23.8|
|e580 Health services, systems and policies||32.4|
|e590 Labour and employment services, systems and policies||35.1|
We developed the ICF-based checklist for the HD treatment, and identified the physical and psychosocial problems that the HD patients had. We showed the features of HD patients with problems associated with disease or impairments as well as daily life activities. The checklist based on ICF, which is an integrated model of the medical and the social models, enables us to understand HD patients comprehensively. We will continue efforts to identifymore relevant ICF categories to complete the final version of the checklist.
The authors would like to thank: Dr. F Kato, nephrologist, Dr. A Ito, hospital director, and H Sato, director of nursing department, at the Masuko Memorial Hospital; Dr. C Yamazaki, hospital director, and M Imai, chief nurse at the Masko Clinic Subaru; and Dr. H Tawada, hospital director, and S Sekine, medical social worker, at the Tawada Hospital; and Dr. H Tawada, hospital director, K Moriya, medical social worker, and A Nakanishi, manager; and Dr. Y Hatanaka, hospital director, and H Kozakai, medical social worker, at the Sakashita Clinic, for their support with respect to the interviews.