Aim: The current needs of patients with idiopathic osteonecrosis of the femoral head were analyzed for the purpose of seeking effective support programs that would maintain and improve the quality of life of the patients.
Methods: A focus group interview method was used to collect data. Interviewees included eight patients. They were asked about their opinions and needs with respect to medicine, health care, and welfare.
Results: Overall, four needs were revealed as particularly significant: information needs, decision-making in the absence of pre-established treatment, psychological support, and sufficient medical healthcare institutions.
Conclusion: These four needs are useful for the foundation of future support systems, whose main concerns will be: counseling support for patients with idiopathic osteonecrosis of the femoral head, currently adopted institutions, and resources that may be required in the future.
The QOL of ION patients is, on the health-related QOL 36-Item Short Form Survey, lower than the national population norms of Japan (50s), and remains as low as in the 30s and 40s even after treatment (Seki, Hasegawa, & Masui, 2006). Also, the ION patients scored lower than the patients of other bone-related intractable diseases (Mitoku et al., 2008).
More than 50% of ION patients have suffered steroid-induced iatrogenic diseases due to steroid treatment for collagen disease, asthma, nephritis, and organ transplant (Kubo, 2007).
Studies on ION are numerous in the fields of orthopedics, rehabilitation, and physiotherapy (Fukui, Kominami, Shinohara, et al., 2006; Lafforgue, 2006; Matsumoto, 2006; Nagasawa, 2005); however, these studies are mostly concerned with prognosis. Researches concerning nursing, health care, and welfare for ION sequela, or in other words, researches concerning social support, support technology, and support system, are not currently being satisfactorily pursued.
Another study on community-based psychiatric care reported that meeting self-perceived social needs, beyond symptoms reduction, is of particular importance for ensuring a better QOL (Lasalvia et al., 2005). Therefore, it is important to ascertain the difficulties and needs (both manifest and latent) of patients, and to effectively support them. As far as we can determine, research has yet to study QOL and perceived needs in patients with ION.
Definition of “nanbyo” (intractable diseases) in Japan
The Japanese word “nanbyo” refers to a disease that is not medically or clearly defined. The expression is commonly used in Japanese societies to refer to so-called “intractable diseases”. Therefore, the diagnosis of an intractable disease may depend on the level of the health care and the social state of affairs of a country at that time. Nevertheless, some diseases remain difficult to treat and easily become chronic, and these are the kind of diseases that are now referred to as intractable. According to the definition set out in the Principles of Policy for Intractable Diseases published in 1972, “nanbyo” refers to: (i) diseases that have resulted from an unidentifiable cause, are without a clearly established treatment, and have a considerably high risk of disability; and (ii) diseases that chronically develop and require a significant amount of labor for the patient's care, causing a heavy burden on other family members of the patient, both financially and mentally (Kubo & Sugano, 2010).
Definition of “needs”
The term “needs” is variously defined and interpreted. “Needs” is a word used in various fields such as medicine, nursing, and social welfare, which renders the meaning and definition ambiguous (Brewin, Wing, Mangen, Brugha, & Mac, 1987; Hansson, Sandlund & Bengtsson, et al., 2003; Miura, 1995). To mention a few examples, it has been defined as “that which is required for an individual to easily and effectively maintain or support herself” (Wiedenbach, 1963), “that which contributes to the promotion of welfare in organisms” (English & English, 1958), and “Man has five needs of (i) physiological needs, (ii) safety needs, (iii) social needs, (iv) esteem needs and (v) self actualization, and they are hierarchically ordered” (Maslow, 1954).
A qualitative research method was used in order to grasp the needs that reflect the participants' opinions and wishes. Focus group interviews (FGI) were used to collect data (Lederman, 1990; Takayama & Anme, 1998).
The FGI is a group interview method which Merton and Kendall (1946) used to compile their research results. At first, it was used primarily in marketing, but presently it is used in broader fields such as communication, politics, and advertising. Group interviews enable specialists to ascertain on the one hand the needs and emotions of the client, and on the other hand the awareness and behavior of nurses (Holloway & Wheeler, 1996).
In Japan, Takayama and Anme (1998) employed FGI in their medical, nursing and welfare activities. FGI is the analysis of focus group interviews that can demonstrate research results and provide the basis for change.
To encourage participants to speak up, the interview was conducted by an interviewer and a recorder/observer. The content of the interview was recorded on a digital voice recorder upon participant approval. Interviews were held on 20 September 2009 and 1 November 2009, and were 90 min and 120 min, respectively.
Participants were ION patients (within 10 years of onset) currently under homecare. Four patients in pre-surgical conservative treatment and six who had already undergone total hip replacement (10 in total) were referred by the department of outpatient in orthopedics of a university hospital. Of these, eight patients agreed to participate in the research. Basic information about these participants is given in Table 1. Of the eight research participants, three had yet to have the hip replacement surgery and five had already had the surgery. The youngest was in his/her 20s, and the oldest was in his/her 60s. The average age was 49.3 years. All of the participants (one male and seven female) had femur head necrosis (Table 1).
Table 1. Participant information
B, both sides; L, left side; R, right side; SLE, systemic lupus erythematosus; THA, total hip arthroplasty.
Pain on both sides
Walking with a crutch
Mild pain of left side
Severe pain of both sides
Walking with a crutch
Lower back pain
Walking with a crutch on both sides
Feedback and needs were recorded in accordance with the interview guide (Box 1).
Box 1 Interview guide
1Please feel free to talk about difficult or striking experiences you have had after contracting the disease.
2What were some especially tormenting or notable experiences after contracting the disease?
3What was it like when symptoms started to show, and how did you feel about it?
4Was there any hesitation about the treatment method?
5How did the physical disability affect your work?
6Please express your opinions about medicine, health care, and welfare in general.
Data were analyzed in accordance with Lederman's analysis method (Lederman, 1990). Recorded interview material was transcribed in its entirety, and significant thoughts were extracted and summarized.
Similar data were compiled by KJ methods (Kawakita, 1967, 1970), and the latter were then categorized into thematic groups. Supervision by a qualitative research specialist ensured the confirmability and transferability of the categories. By using the categorized data, a conceptual scheme of the structure of needs of subjects was made (Takayama & Anme, 1998).
Participants were informed of the overview of the research in print which was distributed at the time of calling for participants, and each one signed for approval at the interview. The present research received approval by the Medical Ethics Committee of Hokkaido University Graduate School of Medicine on 16 June 2009.
Feedback and needs regarding medicine, health care, and general welfare were gathered. Overall, the needs of the subjects were classified into 71 data, 15 subcategories, and four categories. These categories were discussed among qualitative research specialists. On this basis, the theme of basic structure of the needs of the participants was verified and a conceptual framework was made (Fig. 1). The interview questions were formulated in accordance with the six interview directions.
“Informational needs” comprise the subcategories of “information from doctors, other patients, and media” and “cooperation among healthcare providers”. Patients were striving to acquire information from medical professionals, patients with similar symptoms, the Internet and other media. Also, they expressed the desire that information regarding their disease be correctly communicated from one healthcare provider to another:
I didn't know about this disease at all, so I wanted to hear what other patients had to say. I don't know anyone that had total hip replacement. I am hoping to hear how they are faring after the surgery. (Female, 44 years old.)
I was looking on the Internet for possible treatments that do not involve surgery. I then found Kaatsu treatment, which apparently worked for some people suffering from necrosis. Maybe I will try this too. (Female, 30 years old.)
My current doctor was supposed to have received a reference letter from my former doctor . . . But when I said my current condition was painful, he was rather surprised that it was that bad. This meant that information that should be reported through the reference letter was really not there. There are drugs that my former doctor told me never to take, and I am really worried about how well this information is communicated through the reference letter. (Female, 44 years old.)
Needs with regard to decision-making in the absence of pre-established treatment
“Needs with regard to decision-making in the absence of pre-established treatment” includes subcategories of “relief of pain” and “demand of treatment plan” vis-à-vis the medical staff. On the other hand, however, there were also feelings of “self-care” in which one wishes to decide the treatment method for him/herself, and of “aversion to surgery”. The patients had many worries concerning “post-surgical limitations” such as dislocation after surgery and the lifetime of the artificial joint:
I was always in pain and the medication became less and less effective. When the painkiller would stop working, it would truly be unbearable. At the time of surgery when I had an X-ray, bones were already crushed. Too much patience on my part! (Female, 54 years old.)
I am completely afraid of surgery; that's my problem. There is no way I'm having the surgery. (Male, 41 years old.)
At first I wasn't really ready for this. I spoke with my mother. At times I would be inclined to have the surgery . . . It's a serious decision . . . But knowing that there will be some sort of limitation makes me think that maybe it is better to just bear the pain. (Female, 27 years old.)
Psychological support needs
Aside from “physical pain”, ION patients had many psychological anxieties including concerns of “expansion of necrosis” (of being apprehensive about expansion into unaffected areas), “future lifestyle”, “future prospects in the long run”, and “grief”. From long-term chronic disease and pain-related behavioral suppression, patients became unable to interact with others or leave their homes, and some had panic attacks. In “doctor's voice”, the patients expressed the demand that doctors speak about things other than medical information, which might give them assurance and trust. There were many cases where “psychological support needs” were an imperative:
In the first surgery I inquired about the other leg, but the doctor said nothing. In about half a year that other leg became bad, and it turned out to be the same disease. (Female, 60 years old.)
And the person that got the surgery along with me had asked the doctor about dislocation. The doctor said it can happen but he doesn't do sloppy work so it should be fine. (Female, 62 years old.)
I was seeing the psychiatrist for some time, and was told I had panic disorder and depression. I honestly don't feel like going outside, I really don't. I can't get on the subway or bus because I will have a panic attack. I still haven't been able to do it. (Female, 44 years old.)
I needed to really encourage myself to be able to go outside. I was mostly thinking by myself, not being able to go out, not being able to talk to anyone about this. I don't really want to show my weakness. There were times where I thought I might have depression . . . I got a phone call from a community health nurse of city “A”. It was long before the surgery, but she was really nice. I wasn't particularly troubled at the time, but the conversation made me feel really relieved and relaxed. I really appreciated her kindness and . . . I started crying all at once. (Female, 62 years old.)
Needs pertaining to medicine, health care, and welfare program
“Needs pertaining to medicine, health care, and welfare program” comprised three subcategories consisting of “specific support in everyday life”, “economic support”, and “explanation and incorporation of welfare program”. “Specific support in everyday life” included needs involving outdoor activity, housework, and childcare. Securing “economic support” after contracting ION was raised as a particularly urgent problem. Also, patients were requesting “explanation and incorporation of welfare program” while they were still hospitalized:
What are the options for people who can't work even though they want to? We need money to make a living. My daughter had just entered high school, but that brings a reduction in financial aid. The tuition fee was paid for, but there is no money for school trips, for instance. There are ski-classes but there are no skis, no ski-jacket. There is no more aid. Livelihood assistance only provides the minimum amount, so we can't save up money. In the end we are caught in a deadlock, and so we have to cut down the food budget. That's how it goes. (Female, 44 years old.)
At the hospital I was told to get a disability certificate, but there is no explanation about what sort of people are eligible for care insurance. I got the information from another patient. I want the caregivers to tell me precisely what benefits I can get from welfare. Since I have already had the surgery, they might as well inform me of everything I should know before I was discharged. (Female, 54 years old.)
Through the present study, four needs with respect to medicine, health care, and welfare were extracted as particularly pressing for the patients concerned. These were: “informational needs”, “needs with regard to decision-making in the absence of pre-established treatment”, “psychological needs”, and “needs pertaining to medicine, health care and welfare program”.
Idiopathic osteonecrosis has a small pool of patients, and is still indeterminate with regard to causes and treatments. Like patients of other interactive diseases, ION patients suffer from a lack of relevant information and uncertain prospects; “informational needs” can be thought to be a result of such anxiety. In order to satisfy these needs, provision of information by specialists is of foremost importance. Doctors have the responsibility to provide information (Beck, Trombetta, & Share, 1986; Stern, 2005). Patients demanded communication skills, sympathy, discretion, and reliability in doctors. They also needed information not only from doctors but also other caregivers (Pearson & Raeke, 2000), especially for timely information relevant to the disease and social resources.
Promotion of patient associations and organizations helps provide spaces for interaction among patients. Information acquired from patients with the same ailment is considered highly useful and valuable. From this, promotion and construction of a system that provides opportunity for patients to gather and exploit accurate information regarding their diseases and treatments was deemed desirable.
With respect to “needs with regard to decision-making in the absence of pre-established treatment”, it was revealed that patients had a difficult time selecting treatment method, even though the treatment guideline was provided by the Ministry of Health, Labor, and Welfare.
Total hip replacement reduces pain, but for young patients there remains worry about the lifetime of artificial joints (Ono, Hirata, & Yamada, 2005; Pollard, Baker, Eastaugh-Warning, & Bannister, 2006). Furthermore, there are only a limited number of skilled surgeons. There are also cases in which patients have no options other than to continue to live with the pain, while preserving the joints as much as they can. It is important to recognize that this decision-making is left to the patients. Strengthening of patients' self-management program is thought to be of much importance (Jordan, Briggs, Brand, & Osborne, 2008). As a need pertaining to treatment, the issue of cooperation among doctors has been raised, which has not only to do with doctors within an institution, but also with interaction between physicians and orthopedists, or between one hospital and another. Considering local rehabilitation and regional order, it will also be necessary to promote linkage from orthopedic to local clinics (Denton, 1976; Hagita & Miyata, 2010; Smith, Allwright, & O'Dowd, 2007).
In “psychological needs”, it was revealed that ION involves pain and limitation of movement, hence it is likely to confine patients in their homes. From unemployment or difficulty in social rehabilitation, there emerge problems regarding livelihood maintenance. Patients with these problems get worn out, both physically and psychologically. ION-related studies tend to focus on the pediatric/physical side of the matter, but considering the lives of patients having to live with the disability, and measures to maintain and promote the psychological health of the patients are also important (Murakami & Ishiai, 2007).
The last of the needs extracted in the present study are “needs pertaining to medicine, health care, and welfare program”. They include rental service of therapeutic items such as clutches and wheelchairs, and also provisions that facilitate activity with these items, including handrails. These involve exploitation of “home support services for interactive disease patients” and “daily equipment services for interactive disease patients”, among others. However, there were cases where patients were denied service due to the shortage of budget.
Promotion of social aid programs, having to do with the Services and Supports for Persons with Disabilities Act and “public assistance”, was strongly desired by the participants. The Services and Supports for Persons with Disabilities Act does not effectively apply with respect to sequelae of interactive diseases. Also, financial aid received in accordance with the Public Assistance Act is not sufficient for the livelihood of the participants. The administration should actively engage in these two issues. The programs concerned are fundamental, and therefore crucial, for the livelihood of the participants. Participants strongly desired that the administration offer administrative consultation, secure partnerships, and an expansion and reinforcement of the relevant programs.
In regards to care needs, physical support regarding “pain” and “limitation of mobility”, and nursing support that intend to remedy “bewilderment and anxiety about surgery” and “psychological pain”, were called for. Also, participants strongly desired support with respect to regulations concerning medical services and welfare while they were still hospitalized. Improvement in these areas will require cooperation not just among healthcare providers but also with persons in other areas such as health and welfare. It is also necessary to consider building a lifelong care system, including regional training in long-term nursing practice.
Idiopathic osteonecrosis patients in homecare and patients who have contracted a chronic intractable disease are susceptible to various hindrances of QOL: physical, psychological, and social. According to Kodera (Kodera, Tanji, & Watanabe, 2004), the relation between QOL of interactive disease patients and medical/health needs shows that the more one has problems associated with the treatment or the less one is satisfied with the medical treatment, the lower his/her subjective QOL. In order to improve subjective QOL, meticulous efforts to respond to the above-mentioned needs are necessary.
In supporting patients with intractable diseases and disabilities, care is to be prioritized over treatment. Therefore, nurses play an extensive role in such support. In this approach, nurses are expected to understand the patients holistically and search for effective support strategies considering the physical, mental, and social aspects. Assessment of patient needs should be performed as a patient-centered treatment methodology (Cott, 2004). This is a support method which focuses on listening attentively to the patients to determine an effective support system. Future support should pay greater attention to patient needs.
Limitations and future directions
First, a relatively small number of patients with ION were surveyed, which did not accomplish theoretical saturation and restricted generalization of our findings. A wider category may be obtained. Therefore, further theoretical sampling should be undertaken.
Second, what one says in an interview may differ from what one does. We need to support our findings with direct observation of clinical encounters, and physician and nurse interviews. Third, the analysts were all healthcare professionals (nurses and physicians), which might point toward the medical profession's perspectives in the results, although member-checking was performed.
Future directions to take would be an increase in the number of participants. Additional quantitative studies (e.g. questionnaires) will be effective to establish theoretical triangulation, which means researchers try to view their research problem from different angles by engaging several data collection methods.
Bradshaw (1972) categorizes needs into four groups: normative needs, felt needs, expressed needs, and comparative needs. Normative needs are those determined by specialists and administrative officers. Felt needs are those viscerally had by the patients concerned. Expressed needs are the manifestations of felt needs. Lastly, comparative needs are those determined through comparison of individuals and groups currently receiving some service. In the present study, felt needs and expressed needs were analyzed. However, felt and expressed needs do not sufficiently constitute the “real need”. Shirasawa (1998) argues that real need should be derived by establishing mutual trust in accordance with normative needs, determined on the basis of felt needs and knowledge of the specialists and social standards. In the future, investigation into normative needs is necessary, and support programs for ION patients must be reassessed in light of it.
“Informational needs”, “needs with regard to decision-making in the absence of pre-established treatment”, “psychological needs”, and “needs pertaining to medicine, health care and welfare program” were revealed as expressions of the needs of patients.
We sincerely and deeply thank the ION patients who participated in this study. We are also indebted to Ph.D. student Kengo Kisa, Takayoshi Terashita, Sumiko Oshima in the Seminar of Healthcare Systems Research, School of Medicine, Hokkaido University, for organizing this study.