Abstract
The objectives of this correlational study were to explore whether the oral health-related quality of life (ohrqol) of adolescents/young adults with cleft lip/palate (CL/P) relates to their own and their parents’ satisfaction with treatment and treatment outcomes. Data were collected using mailed surveys from 30 parents and 27 patients who completed CL/P treatment. Patients’ ohrqol was assessed with the Michigan Oral Health-Related Quality of Life (MOHRQoL) Scale, treatment satisfaction with Kiyak’s Post-Surgical Patient Satisfaction Questionnaire, and satisfaction with treatment outcomes with Noor and Musa’s Cleft Evaluation Profile. Overall, patients reported a positive ohrqol. Their satisfaction scores ranged from low to high. Patient and parent treatment satisfaction was related, while their outcome satisfaction did not correlate. Patients’ MOHRQoL scores correlated with parent and patient treatment satisfaction and parents’ outcome satisfaction. Patients’ MOHRQoL scores did not correlate with patients’ outcome satisfaction. The patients’ level of discomfort was strongly correlated with patients’ and parents’ treatment satisfaction and parents’ outcome satisfaction. In conclusion, regardless of outcome satisfaction, young patients with CL/P report a quite positive ohrqol after treatment completion. There is a clear relationship between the ohrqol of these patients with CL/P and their own as well as their parents’ treatment satisfaction assessments.
Cleft lip/palate (CL/P) is the fourth most common birth defect and the most common congenital defect of the face. It occurs in 1:600 children in the European population, but is more common in Asian (1:500) and Native American populations (1:300) . Most cases of CL/P are isolated, and 25% of CL/P cases have been associated with other inherited genetic abnormalities . Almost one-half (46%) of patients with clefts present with cleft lip and palate, followed by isolated cleft palate in 32%, and isolated cleft lip in 21% . Repair of a CL/P is accomplished over a time period from infancy through adolescence and even young adulthood with the collaborative efforts of many professionals depending on the patient’s needs. Definitive results are often not clearly assessed until young adulthood, due to growth and development and adherence to the treatment plan . Specialists in oral surgery, plastic surgery, primary care, otolaryngology, general dentistry, orthodontics, audiology, speech pathology, genetic counseling, psychology, and social work often work on a cleft palate team to accomplish these comprehensive treatment plans for patients with CL/P.
At the end of this complex set of treatments, the question arises whether these patients have a positive oral health-related quality of life (ohrqol) and how their ohrqol is related to their satisfaction with the treatment and the treatment outcomes. Ohrqol is defined as a person’s assessment of how functional factors, the experience of pain or discomfort, psychological factors (including appearance and self esteem), and social factors related to a patient’s oral health affect a person’s well-being .
When considering comprehensive CL/P care, team members must consider the patients’ and, in the case of pediatric patients, even the parents’ background, cultural upbringing, current or past experiences with oral disease and health care, current state of mind, and expectations for treatment and outcomes along with hopes for the future because of the cumulative effect on the person’s well-being. This approach shifts the focus onto the patient as a whole rather than merely the treatment site. Success and optimal cooperation in the team of clinicians, patients and parents will be achieved with a better understanding of the entire, complex picture in mind.
Considering patients’ ohrqol could be of special interest for clinicians because research showed that patients with more negative ohrqol scores were more likely to desire further treatment than patients with more positive ohrqol scores .
Facial disfigurements due to craniofacial diseases and conditions and their treatments can potentially have significant consequences for these patients’ lives. Research showed that these patients might experience a loss of self-image and self-esteem , anxiety, depression, and social stigma throughout their lives . These psychosocial effects may affect educational, career, and social opportunities . Psychosocial outcome studies for patients with CL/P suggested that the influence of the family on the children’s perception of their CL/P is paramount in the development of children’s self esteem and perception of their condition . Social relations can also be affected because of societal stigma, teasing, bullying and unwanted questioning that may begin early in life . Anxiety and depression may be a result of these negative interactions, and speech or hearing impairments may exacerbate these impacts. Given these consequences, it is not surprising that research showed that CL/P can affect patients’ quality of life .
Research also focused on patients’ levels of satisfaction with their prior treatments and the outcomes of these treatments. Satisfaction with facial appearance was found to be related to psychosocial functioning and health-related quality of life , and this satisfaction often remained the same with increasing age . Satisfaction with functional aspects, such as speech and hearing, were shown to increase with age . Few patients and parents reported overall dissatisfaction with treatment . However, both patients and parents agreed that dissatisfaction revolved around appearance of the nose, lip and facial profile rather than functional components, such as speech and hearing, which were nevertheless important considerations . S emb et al. reported that 65% of patients and parents were interested in further treatment. These authors found no clear relationships between the clinicians’ ratings of objective outcomes and the patient/parent outcome satisfaction nor between the amount of treatment and the patient/parent outcome satisfaction . Providing clinicians with better ways to understand the patients’ perspectives could therefore be significant.
Recent reviews of the literature concerning children’s ohrqol showed that this concept can be measured in a reliable and valid fashion . Research concerning the ohrqol of patients with CL/P is scarce. B roder & W ilson -G enderson showed that pediatric patients with CL/P rated their ohrqol more negatively than pediatric patients in general, and orthodontic patients. In contrast, L ocker et al. showed that the overall quality of life of children with CL/P did not differ from that of children with other dental conditions such as dental decay. These authors also showed that children with CL/P rated their oral health as better than children with untreated decay. Quality of life research has also been conducted with adult patients with CL/P as well as with mothers of patients with CL/P . This research showed that patients with repaired CL/P had more dental disease, including poor oral hygiene, gingivitis and caries, especially in the maxillary anterior region in proximity to the surgical repair compared with the general population .
In consideration of these findings, it would also be interesting to explore how ohrqol of patients with CL/P relate to these patients’ and their parents’ level of satisfaction with the treatment and with the treatment outcomes. Clinicians might be especially interested in these issues during or after the last stage of treatment. The aims of this study were to explore the ohrqol of patients with CL/P at this point in their lives and to investigate whether these patients’ ohrqol correlates with their own and their parents’ satisfaction with the CL/P treatment and the treatment outcomes.
Materials and methods
This study was approved by the Institutional Review Board for the Medical Sciences at the University of Michigan (HUM00026590).
The cleft palate team at the University of Michigan – Health System maintains a database of patients with CL/P. This database was used to identify patients with the following inclusion criteria: the presence of a CL/P; patients aged under 25 years; and patients in the last stage of nonsurgical treatment with a relatively recent completion of their surgical treatment at the time of the mailing. If the patients desired further surgical interventions, they were excluded from the study. Based on these inclusion criteria, 85 patients were identified. These patients’ oral surgeon contacted them and their parents with corresponding mailed letters and informed them about the study. Of the original 85 sets of surveys mailed out, 25 sets were returned as undeliverable due to invalid addresses. In response to the remaining 60 mailings, 27 patients (response rate 45%) and 30 parents (response rate 50%) returned the questionnaires. Included in these responses were 24 sets of surveys for which both the patient and the parent in one family had responded. An overview of the respondent characteristics is provided in Table 1 . Data were therefore collected from 27 patients (average age 18.74 years; age range 12–23 years) who had begun the final nonsurgical stage of their CL/P treatment, and from 30 parents of these patients.
| Patient | Parent | |
|---|---|---|
| Number of respondents | 27 | 30 |
| Number of parent/child dyads | 24 | 24 |
| Diagnosis | ||
| Bilateral cleft lip | 2 | 2 |
| Bilateral cleft lip/palate | 5 | 7 |
| Unilateral cleft lip | 1 | 1 |
| Unilateral cleft lip/palate | 10 | 11 |
| Isolated cleft palate | 7 | 7 |
| Submucosal cleft palate | 1 | 1 |
| Gender | ||
| Male | 13 | 7 |
| Female | 14 | 23 |
| Age | ||
| Mean | 18.74 | – |
| Range | 12–23 years | – |
| Approximate number of operations | ||
| Mean | 6.07 | |
| Range | 1–25 | |
| Age of patient at beginning of final stage of treatment | ||
| Mean | 11.00 | |
| Range | .1–20 years | |
The patients’ average age at the beginning of the final stage of their surgical treatment had been 11.00 years (range 1 month to 20 years), and the average age when responding to the survey was 18.74 years (range 12–23 years). Approximately half of the patients were female (52%) and the majority were from a European American background (93%). Two patients had bilateral CL (7%), 7 patients had bilateral CL/P (24%), 1 patient had a unilateral CL (4%), 11 patients had unilateral CL/P (37%), 7 patients had isolated CP (24%), and 1 patient reported submucosal CP (4%). One patient and parent dyad did not respond to the question regarding diagnosis. While approximately the same number of male and female patients answered the surveys, 7 of the parent respondents were fathers (23%) and 23 were mothers (77%).
Recruitment letters were mailed to the patients and their parents who had been identified. These letters were accompanied by a survey for the patient and a survey for their parent plus separate stamped return envelopes. These two surveys differed, making a joint response to the surveys by each patient and parent rather difficult, and were supposed to be answered individually by the respondents. A second mailing was sent 6 weeks after the first mailing to those former patients and parents who had not responded to the first mailing. The respondents returned the surveys anonymously.
The recruitment cover letters for the parents and the patients were written and signed by the patients’ provider. The fact that the parents received the survey and had to pass it on to their children assured that the parents gave consent to have their children respond if the children were under 18 years of age. No written consent and assent were required because the signatures on these forms would have revealed the respondents’ names. The respondents were informed that the parents could choose to respond without a necessary response from the patient and vice versa.
The patients’ oral health-related quality of life (ohrqol) was assessed with the Michigan Oral Health-Related Quality of Life (MOHRQoL) Scale (see Table 2 for the wording of these questions). This scale consists of 14 items. The answers to these items were given on a 5 point Likert scale format with 1 indicating ‘do not at all agree’ and 5 indicating ‘agree very much’. The original authors of this scale assumed that ohrqol has four separate aspects . The statements were designed to cover functional limitations, pain/discomfort, psychological as well as social concerns related to patients’ oral health.
| My teeth | 1 = not at all | 2 | 3 | 4 | 5 = very much | Mean a |
|---|---|---|---|---|---|---|
| a. Limit the kinds or amounts of food I eat. | 17 | 3 | 2 | 2 | 1 | 1.68 |
| b. Cause discomfort. | 18 | 6 | 0 | 1 | 0 | 1.36 |
| c. Cause a lot of worry or concern. | 20 | 2 | 2 | 1 | 0 | 1.36 |
| d. Keep me from socializing/going out. | 23 | 1 | 0 | 0 | 0 | 1.04 |
| e. Make me uncomfortable when eating in front of others. | 22 | 2 | 1 | 0 | 0 | 1.16 |
| f. Make me uncomfortable when speaking in front of others. | 22 | 2 | 1 | 0 | 0 | 1.20 |
| g. Make me nervous. | 20 | 5 | 0 | 0 | 0 | 1.12 |
| h. Make me concerned about the looks of my teeth/mouth. | 20 | 0 | 3 | 2 | 0 | 1.48 |
| i. Keep me from enjoying life. | 22 | 2 | 0 | 1 | 0 | 1.20 |
| j. Interfere with my daily activities. | 23 | 1 | 0 | 1 | 0 | 1.16 |
| k. Interfere with my intimate relationship. | 22 | 2 | 0 | 0 | 1 | 1.24 |
| l. Have a bad effect on tasting food. | 23 | 1 | 0 | 0 | 1 | 1.20 |
| m. Reduce my general happiness with life. | 20 | 5 | 0 | 0 | 0 | 1.20 |
| n. Affect my life in all of its aspects. | 21 | 2 | 0 | 0 | 2 | 1.40 |
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